I've experienced the laughing and crying uncontrollably. The laughing 1x for about an hour. The crying would last for a 1 1/2 days for about 2x a year for several years. All before diagnosis. After diagnosis and on various treatments I do not have this issue. I never mentioned this symptom to Doctor but learned it is a ms symptoms
I have 9 years with MS and I will like to be an artist but the pain in my body make limitations on performance and to continue music career, the medical marijuana has been very imp causing a positive impact like a creator and to reduce a lot of inflammation but the pain is a nightmare in my life, ua-cam.com/video/wAiWDK0o4Yo/v-deo.html
Kari Short Keep holding on! You expressed what I have been feeling so well. Profoundly accurate!!! I feel so deeply connected to this sense of not being able to get out of my own head. I would like to offer you a bit of hope. I lost my humour for months but it did come back and I hope you experience the same"recovery!"
I am a 57 yr old black man . I was diagnosed with MS a week ago. One thing I suffer from besides constant pain up and down my spine, neck and back, is waking up not knowing where I am or the time of day etc.
Thank you Dr. Boster. Many of the unusual symptoms you described is what I experienced before my diagnosis in 2010. I was actually diagnosed in the psychiatric ward of a hospital, after a 2 week stay. I had psychosis, erratic behavior, laughing spells, cog fog, depression, and I'm having the itching going on now for past 2-3 years. In the psych ward, a neurologist/psychiatrist asked me to explain my symptoms once again and she ordered an MRI and spinal tap and diagnosed me with MS. It was a long, hard scary journey because for almost 2 years every hospital was saying I was having a mental breakdown. What you are sharing is true. Thanx! 😁👍
A tickle is a stimulated pain sensor. When our nerves are damaged and still trying to fire, it sometimes comes across as cold, burning, pain or itching. I have lived for years with the idiopathic (unknown origin) itch for many years. Make sure you are using everything hypoallergenic. I used Benadryl until I had to take Norco for pain. I use a soothing lotion, like gold bond excema. I also do dry brushing which is great for circulation. I hope this helps someone. There were no drugs or help when I was diagnosed.
When I was first diagnosed, I had so many symptoms that I needed to write them to ask to my neurologist if it was normal. Some of them was surprisingly weird : I smelled cigarette smoke for 2 consecutive weeks (yummy), I also had horrible itching on both legs at the same place. Sadly the neurologist told me with confidence that the half of my symptoms that I described was not MS but probably "in my head". He took me as an hypochondriac and I felt misunderstood and alone. Sadly, he was an MS specialist. Your UA-cam videos, FB groups, and research studies made me learn better what MS can really do to my body.
You struck a nerve for me with the hypochondriac remark. For the past 3+ yrs I've been telling my doctor all the symptoms I've been having n experiencing and was brushed off as psychosomatic/hypochondriac until I had a stroke at 49yrs old, which was caused by an inflamed brain lesion along mri finding 7 more. I went from zero support for years and told its probably your hypothyroidism and in your head to Within a month a team of doctors, MRI's, tests etc.. who all of a sudden were like oh these symptoms are obvious 😒
Itching on my right foot was my first symptom years before diagnosis. I literally scratched it raw then still scratched the raw flesh. It was like my foot bones were maddeningly itching and I couldn’t relieve the itch. I couldn’t sleep with it. It went on for months. My doctor said it was an “Itch Scratch”rash that I was causing myself by scratching!? Then after time,he said it was Stress, then depression.............. So frustrating. As a woman I felt not believed, seen as hysterical (I’m really chill) At the same time, I had 2 separate attacks lasting for 3-4 months of one sided torso and arm numbness - also “stress” and a “trapped nerve” (at 20 years old!?) I then had a bout of 3 months of wellington boots of pins and needles Then two weeks of Vertigo where I couldn’t lift my head without vomiting and had to crawl on my hands and knees, eyes closed, to the bathroom as world was spinning. That was “A Virus” and was followed straight by two weeks of double vision I was finally diagnosed RRMS after 3.5 years when I lost joint position sense at the arm
I'm so glad I found this video. I have progressive MS and in June of this year I had psychosis and they put me in a mental hospital for nine days and diagnosed me with a mental illness. I'm 41 years old and had not previously experienced psychosis, just depression and anxiety. Now I know I need to inform my neurologist about the psychosis and hope he knows it can be a symptom of MS. At the hospital, they put me on a medication that's used for schizophrenia, which I'm still taking. I'm certain it's the MS that is causing the depression, anxiety, and other mental quirks. I see my neurologist in 10 days. Thanks for this video. I love all of your videos.
Has primary biliary cholangitis been ruled out? I also have that as another auto immune. disorder. This was the source of my itching. It's pretty rare to have MS and Primary Biliary Cholangitis. There's about 350 worldwide with these two together.
I have been getting swelling on my face, sholdes and back and one time my tongue.. it comes on suddenly and goes away just as suddenly I'm trying to figure out what's going on and my research has brought me here.. I also get numb when laying down and been having pain and foot problems that making it hard to walk..
I was diagnosed with MS a few months ago and this entire experience is rare and unusual for me. This video was extremely informative and necessary. Thank you for the information doctor, its much appreciated!
@@mishaalzk6033 My initial symptoms were balance and coordination problems that were persistently getting worse in a short amount of time, numbness in my arms, legs, feet and toes, brain fog, sharp shooting pains in my cervical spine (neck) whenever I put my head down, I would randomly go numb from the waiste on down. All of these things happened in the beginning.
I haven't been diagnosed with MS, but my doc wants to run tests for it. A weird symptom I've been experiencing for years is when my body heats up when I'm doing anything active, like cleaning, going for a walk, etc. My muscles and skin feel really hot and start going numb, sometimes I get a vibrating sensation in my hands, then it becomes harder to move around. As soon as I sit down and my body cools off it gets better. I've been experiencing numbness for years it seems to come and go, but it gets way worse when I'm doing anything active. So weird, even my tongue and throat will go numb sometimes, the numbness seems to be worse on my left side. This is all accompanied by extreme fatigue, trouble keeping my balance and even walking at times, blurred vision, brain fog/ forgetfulness. I'm also constantly dropping things. Very scary and frustrating, I'm hoping I can get some answers soon. Thanks so much for this video!
Sounds much like me, I was diagnosed a month ago. My neurologist says I've had it 2 decades or more. It's a very strange disease that has made my life terrible for so long and I had no idea. It wears your soul away to see your life crumble to nothing, powerless to make positive changes. Heres to a better tomorrow, I hope you have found a treatment that helps.
I have the MS fog. I was diagnosed with Bipolar disorder before I was diagnosed, I told the doctor about the depression and that I couldn't laugh anymore, they thought I was crazy. I ended up having bouts with double vision and the eye doctor is actually recommended I see a specialist, so he contacted my doctor and then I was sent to a specialist and was diagnosed with MS. I have the heat sensitivity. I have the bouts of itching that never ends until the flare subsides. I also have diabetes and I've noticed that if my sugar gets too high, it can also be a trigger, or I think it does. Before I was diagnosed I thought I was getting Alzeimers, but it didn't affect me too often. I do have steroid therapy for symptoms and as long as I take all of my medication, the symptoms are manageable. Thank you for putting this information out there.
I cried watching this video and the pathologic itching video as well. I feel like you were describing me specifically the whole time, yes all the symptoms, not just one or two. I have been to over 100+ appointments this year since January 1st and I'm really starting to believe that I am the crazy one 😔 but my local neurologist checked for MS to rule it out and so far they say my brain and cervical MRIs are normal. As I'm writing this the electrical impulses in my head and down my neck and arms are so bad I can hardly stand it. I'm so sorry if this is TMI for a comment but I don't know what else to do. Thank you so much for the time and effort you spend on your videos as they are very educational and I do understand they are not in place of a medical diagnosis.
So glad you have highlighted these issues because there is not a lot of information out there for us. It is so frightening when odd symptoms appear that aren’t discussed often enough, or even recognised as MS symptoms. Thank you so much. 🙏🏻
Thank you for reassuring me about vomitting, my neurologist said that it wasn't MS' fault that I lost 25 kilograms due to unstoppable vomitting. I was lost, so I thank you, from the bottom of my heart !
Lo Merritt I have this too. It feels like the flight or fight reflex, but over exaggerated, and comes on suddenly when it’s not required. Literally I will scream if someone walks past me from behind in the street or I turn a corner and someone is the other side. I have frightened many a poor soul by screaming at them. So jumpy it’s ridiculous 🤯.
Darla, NJ, thanks. Yall are the first to validate that. Yes, someone around corner or pass me in store...GAAAA! People will apologize for scaring me. I tell them it's me not them. Funny as I like scary movies, etc. This is different and not a fun sensation. #WEREALLDIFFERENT
I wish I could see Dr. Boster , too! I loved this discussion today🧐I have the itching but only intermittent-yet has been going on for years. Am so glad to finally understand why! Sometimes I have the crying- usually around a spiritual topic . Older , former nurse and am past the age of receiving the treatment they offer the younger clients. Praising the day I found you! I’ve learned so much and have found relief in the experience of “ learning together “Priceless and Comforting the Compassion you share ❣️
Ah yes, the ITCHING!!! It’s so random and so incredibly frustrating! Benadryl sometimes helps, but I sometimes wonder how much of the relief is psychological, since there doesn’t really seems to be a good reason to be itching to start with.
Thank you for sharing Megan. Pathologic itching in MS is often from a lesion interfering with sensory processing. I see this most often with spinal cord lesions.
Aaron Boster MD I was undiagnosed/misdiagnosed for about 20+ years. When my neuro looked at the first head and spinal MRI that I’d ever had (at age 40), he said something to the effect that it “lit up like a Christmas tree”. There are far too many spinal lesions of varying ages to count. It wasn’t until I started having trouble with walking and balance that I became very concerned and was finally able to get to the bottom of it. It makes sense that the itching is caused by a lesion, but I find it strange that it comes and goes so randomly. Most of my other symptoms (particularly pain and neuropathy in all four extremities) are with me on a constant basis. It seems to be worse in the evening or after a shower. If the itching is primarily in my arms, am I correct in assuming they are probably cervical lesions that cause this particular symptom?
I have bumps and wide spread itching and pain..... I sometimes even walk as if I'm drunk (I don't drink) I get 'cog fog' as well.... I'll be talking with someone and all of a sudden it sounds like they're speaking a different language.... frustrating
I itch and scratch till I bleed and bruise. It's awful. There's no rash or bite, but I cannot stop scratching. Heat seems to exacerbate it, but it occurs whenever it wants. I'm in the diagnostic phase so I don't even know if it is MS, but it sure does act like it. Thank you, Doc. Every little bit of info helps.
Worst symptom for me at the moment is feeling like the physical embodiment of white noise while trying to sleep... feel like I’ve been plugged in to a power socket! - so frustrating and doesn’t help with general fatigue. Really interesting video, thank you 😊
Me too. When I had my first episode someone just talking from behind me would make me jump out of my skin. The sound of something being dropped on the floor would make me scream out loud. Usual every day occurrences caused me to suddenly feel absolutely terrified!
New subscriber . Very new to MS. Optic Neuritis started it all. Itching, fatigue,balance, Vertigo,etc soon followed. Your channel is helping so very much.Thank you so very very much.
Every symptom I have had with ms has never been the same diagnosed 2002. From burning, tingling, neuritis, speech, tips of my fingers and toes sleep, body right side, cough, summer, left leg, lower back pain etc.
I was diagnosed chronic fatigue in my 20s, fibromyalgia in my 30s, a mental disorder I forget the name that you make yourself sick in my 40s or mitochondrial disease, now atypical MS in my 50s. I have vertigo, pure autonomic failure, lost kidney to hydronephrosis, Pots, abnormal evoked potential tests, psvt, previously ibs, reactive hypoglycemia, toxemia with both pregnancies, CEBS, removal of gallbladder, cervical spine issues that cause nausea and overheating, metobolic syndrome, hyperhydrosis, six brain lesions, neuropathy of limbs, blurred vision and elongated lights at night that comes and goes, extreme body stiffness, and now spacticity in my right knee which causes extreme pain, and foot falling to side when laying down, eczema on feet and hands. Cry at inappropriate times and don't feel sad inside. I still feel like something is being missed, and my whole life had Drs think they know, then when tests or symptoms don't add up, they treat me like I'm crazy and give up. The sad part is, my youngest daughter has even worse symptoms to the point of hand tremors in her twenties. They treated us her whole life of symptoms like I had munchousers. It has made her reluctant to seek help as an adult b cuz we were treated so bad. Now they have her on anxiety meds for her hyperhydrosis and tremors. It is not anxiety. I feel it's too late for me. But I so want a diagnosis so my daughter doesn't spend her whole life not being believed and treated bad when she asks for help.
I sometimes get the sensation that hot liquid is being poured on my leg. It takes me a moment to realize nothing was spilled on me. I also have the sensation that I am having tremors in my arms or legs, but my muscles are completely still. I often feel a low level buzzing in my arms and legs which is annoying when I'm trying to concentrate. I could keep going, lol. I don't think my neuro believes many of my symptoms, which is almost as frustrating as the symptoms themselves!
I so get the sensation of the hot water on your leg. I have a similar thing. Mine feels like I have bag of ice laying on my leg. Then it starts to tingle and then gets fire hot and painful. The area of my front thigh where this has been happening for months has become completely numb.
I've had this happen before too...it felt like either hot or cold liquid for me. I also often experience the feeling like I have bugs crawling on me. I'm assuming this is a similar type of reaction with the nerves.
Dr. Boster, love your analogy of our spinal cord, the SUPER HIGHWAY. Please continue to share your knowledge and observations. It's nice to hear a medical professional provide the insight we don't get to ask during our visits to the neurologist. Many thanks. Cindy
Thank you for doing this video! I was diagnosed in March of 2018 after almost 20 years of troubling symptoms that were dismissed as mental health issues or injuries from a later car accident. At 13, I was diagnosed with psychosis after several episodes of not being able to distinguish between reality or not. These episodes led to me being hospitalized 3 times within a year and a half. The following year at 14, I had an incredible and sudden onset of physical symptoms that were brushed of as severe panic attacks. I would describe it to others that I felt like I would have a heart attack, stroke and seizure all at once. These episodes would last hours and happen daily and I was put on several different medications that did nothing to help. I'm not going to explain close to 20 years of symptoms here, but let's just say that I have a lot of the unusual symptoms as opposed to profound physical disability. That's not saying that I don't have physical symptoms, but the ones that I do have are weird and not really explained thoroughly to me. I have no seen spinal lesions, but a large amount of lesions on the brain. I have exacerbations where full body pathological itching is one of my main symptoms and it is horrible. These itching episodes will go on for days to weeks and make it almost impossible to sleep. I get bouts of extreme, sudden cog fog. Very easy startling. I haven't had an episode of psychosis in a few years now, but they were still happening.
You are setting the bar really high. Im so impressed you are offering your expertise so freely. I like to learn about all thinks health related. I'm just a lowly telemetry tech who enjoys learning.
Thank you for the channel. My sister was recently diagnosed with MS and I want to learn all I can about the disease in order to support her as best I can. Subscribed!
TY for subscribing Slynn. Ring the notifications bell and it will alert you with each of my new videos! I try to publish a new vid once weekly (but oftentimes get excited and publish 2 or more! opps!)
@@mcdeigo I love it! I'm a nurse and get tired of people who suffer give an imaginary deity credit when its doctors and nurses that help people. More so, the pharmaceutical companies that create the real help. If we left everything up to faith, there would be an epidemic of death because prayers don't work. That's doing nothing without doing anything at all. We don't see faith hospitals curing people. Scientists and researchers are our heroes. Preacher's are succubus con men.
I have many cognitive issues. I forget short term memory, I forget my words, while talking, they come out wrong or backwards. Things is, people around me, are getting sick of this from me, and just get annoyed. Having a very small amount of people, who do care,read up on it. It hurts when people are fun of me. XoXo’s
@Kris L same here, I am concerned that I may have early onset dementia. But I literally just try to joke it off to my fam, but deep inside I'm scared to death!
This is how I feel too because sometimes when I'm talkin to people certain things don't come out the way it's supposed to be but sometimes I feel like I can't think straight. And luckily my family and friends understand what I be trying to say when I talk to them and sometimes I stutter and I do forget what I want to say half of the time
Andrea Wheatley you should dump your friends they have no love or patience for you, narrow them down, I carry a think book, I’ve called it that, it’s just a pretty book to write thoughts list n words too! 😀 hope this works for you x
I am suffering from the same symptoms. My teenage sons have no patience with me to the point that they would rather not talk with me. They are getting slowly better at being patient with with me. Also, even though I have lived in the US for over 25 years, English is still my second language. I loose words mid sentence and can’t remember how to say it neither in English, nor my mother tongue. Very frustrating.
Thank you, I haven't been diagnosed with MS but this has helped me in compiling a list of symptoms for my medical appointment, symptoms I wouldn't have thought were connected with MS
Same here!!! I don’t need a diagnosis to know I have it though. That, I have no doubt of now that I’ve researched and educated myself on the subject the last few years. I probably know more than the horrific local Drs here. All the awesome caregivers retired from Covid. Nothing has been the same in my area since!
I experience several of the rare / unusual MS symptoms you discussed. It is so frustrating. I am seeing a new Neurologist in Feb...praying he is as attentive to details as you are. Praying for help with my MS
After I had my youngest child, I almost immediately lost all sense of taste and smell. When I mentioned it to my OB/GYN, he said that it sounded like my wiring was screwed up. My MS neuro later confirmed that was caused by MS and it's very common to have a flair up after giving birth. I also have this weird cough that plagues me in the evening hours. After undergoing numerous tests, CT scans, and even a referral to a lung specialist, my neuro said that my chronic cough is likely centrally mediated (whatever that means) and caused by lesions in my cervical spine. No one that I have spoken to on social media, etc. has ever heard of this issue, but I've had several neuros confirm that MS is the likely culprit. I've decided that I was weird before MS and it's only right that I'm still weird with my crazy symptoms. 😜 I'm very blessed that I'm relatively healthy, not in pain, and have all of my mental facilities (most of the time). Thank you for sharing this topic with us as it's greatly appreciated. Patients (such as myself) sometimes need someone who has knowledge and experience to talk to regarding this crazy disease.
You sounds like an #MSWarrior Athena! Thank you for watching and thank you for sharing here. Did the sense of smell every come back? Has the coughing continued?
The smell and taste eventually (5 or 6 months), but not in time to smell my baby's "new smell". The owner of the Thai restaurant I go to was convinced that I was going to cause "holes in my gut" when I kept asking for hotter and hotter, but it was only because I just wanted to taste something...anything really. My cough has never abated unfortunately. Thankfully my regular doctor prescribes medication with hydrocodone, as that's the only thing that works. I'm so thankful all of my doctors work together on controlling my MS issues!
Thank you for making these videos, Dr. Boster. My first husband hid his MS from me...I found out from his mother after we had already spilt. He has to live with her now permanently and he’s lost of most of his function. He has some of these rare symptoms...didn’t realize they were rare. I’m still trying to make sense of it. From what I’m learning here, his symptoms might not be so severe if he JD gotten treatment earlier. He was distrustful of doctors, which ive commented about on one of your other videos. I wish he had had someone like yourself who took time to explain things.
I have been diagnosed with MS for over 30 yrs. I have most of the regular symptoms for MS. I also have lost my sense of humor. Never before have I had any doctor related that this could come from MS. What a relief to hear this in that I don’t feel like I’m going crazy. Thanks doctor.
So I watched this and was all sad and whatnot, worrying about getting these things some day, but then the chickens show up and I felt better watching them. Thanks for that. :)
I have had the unknown itching that lasted for months. I haven’t had it in quite a while thank god. you have given me validity on a few symptoms I was told had nothing to do with MS like the itching and cog fog. Again I love your videos. You should come to NYC and do a Q and A.
Kapluchi, thanks for watching and thanks for sharing. I have an idea- you and I could do a Q and A live on UA-cam! You get a list of questions, we both get on UA-cam live (somehow) and you ask them and I answer them real time. What do you think?
YOU ARE THE REAL DEAL YOU REALLY UNDERSTAND MS PEOPLE MY HEART GOES OUT TO YOU HELL YOUR A DOCTOR WHEN I FIRST GOT MS I COULD NOT STOP LAUGHING DIDNT NO WHAT THE HELL WAS WRONG WITH ME CAUSE ITS NOT FUNNY
Alright, here goes. I have persistent itching mostly on the left side of my spine in the mid back area. I also experience lots of shakiness in my legs. Sometimes I have tingling and numbness in my fingers and toes. I also experience frequent myoclonic seizures ( around 20 to 30 a day. The cognitive fog you mentioned resonated with me. A couple of years ago I was in bed so long I developed 2 bedsores. Headaches. No money, no insurance so I just deal with it the best I can. BTW. No official diagnosis of MS, but 5 out of 5 doctors have said they feel it’s MS. thanks for listening
Thank you so much for posting this video!! I have weird hearing loss in only my left ear and no one was able to figure out why. I also had leg numbness and sometimes severe pain we just figured was a back injury, so grateful to finally find a dr that looked further because I guess hearing loss isnt common. She said last she had never seen an MS patient with it.
I have hearing loss in my left ear from antibiotics, Cipro and Bactrim but any of them can do it. I know that's what caused it because I've taken antibiotics a lot and each time my hearing in my left ear got worse.
PSA is something I have wondered about. My doctor wasn't really impressed with the idea, so we didn't discuss it much. But I wonder- does it have to be sobbing? Is it only in intensity that matters, or can frequency count as PSA? I don't sob, but I cry ALL. THE. TIME. Happy, sad, angry, doesn't matter. I cry probably 4 or 5 times a day, I have never been depressed. It is uncontrollable and it effects my relationships and work. It's constant though, there is no flare up or remission for it, I just cry all the time. It's been this way since my 20s (I'm 45 now, diagnosed at 41). Also, THANK YOU for making these videos. They help me so much!
Yes, the vomiting and the itching. No one could figure it out but now it makes sense that I’ve had two flairs this year. I honestly felt that was going on and am relieved to hear you teach on this.
Really enjoyed this one!!!! I have the zings in the head,smells trigger nausea and vertigo,I have Menniere's. Currently watching the history of the Mayo Clinic on PBS and I saw your upload and now I'm binge watching what I've missed!!
Dr Boster, I have no idea if you would go this far back with a comment, but in this video, you asked for rare symptoms. I have been dx w/ SPMS, and I am older than most in first being dx w/ RRMS. I was falling sometimes 10+ times per day. My neurologist prescribed COPAXONE and, for several years, took daily injections. The first injection miraculously halted my daily falls. YAY! Throughout the years following, I was dx w/ SPMS. Shortly after, I had a complete blackout. I remembered I'd left the milk on the counter to defrost & didn't want to defrost too quickly. I'd meant to refrigerate it before retiring that night. So I was in my room - stood up - the next I remember I was laying on the kitchen floor & my dog was licking my face. Scared me to have that experience but didn't report it to my neurologist because no broken bones no soreness although I did have an indentation on my cheek bone from the tile in the kitchen. It felt bruised but nothing bleeding so went for about another year and randomly experienced another blackout also in the kitchen. I remember facing the pantry and then poof on the floor again, my dog licking my face. Still no broken bones. Didn't feel hurt or bruised or broken. Thought another fluke & kissed it off. However the same year had another blackout. Was getting off the couch then poof on the dining room floor. All this time, I'd been caring for my Mother who was suffering from COPD stage IV. The next blackout occurred in my br. I needed to let my dog out to pee. Got out of bed and poof found myself sliding down the patio door I was going to open to let my dog outside. From my bed to the door is only a few steps but I couldn't remember walking to the door, only sliding down it. During a course of only a few years had several blackouts. I reasoned they were created from all the other stresses in my life. Had problems with my only child, several very close family and a ery close friend had passed away all while caring for my Mother. Since she couldn't take care of the services for my youngest maternal brother, I took care of this 2 years before she passed away. I'd put so much on that back burner and didn't tell any doctor of these occurrences as I was on auto-pilot for so many years. I haven't had another blackout since 2021. It just bothered me to have experienced these. I am on line with the national MS society and asked another source if any one ever experienced these blackouts having been dx with MS. I had one response from a man dx w/ PPMS who claimed he had experienced blackouts as well. All that being said, is this one of those rarities? My MRI's at the time all determined okay. < which I find is very strange as I have al.ost every symptom I've read symptomatic for MS patients. What is your take on this? No blackouts for almost 2 years now but do suffer severe neuropathy in both feet and both legs - migraines-etc etc etc. I'd like to know what your take is on this. I have SPMS yet most symptoms. I hope to hear what you have to say regarding this. Jonni
Thank you Doc for taking the time to do this video as well as all the others I watch them all. Will you please make a video that addresses how menopause affects MS and what we can do about it. I believe this is what has affected my mobility in a bad way 😔 If I lived in Ohio I’ll definitely be in your clinic!
Hi I have my. Vision slightly and I just started getting muscle spasms and often like 4 to times a day my leg will give out I also noice tingling at night that wakes me up.
@@AaronBosterMD This would be great. I have not been diagnosed yet but MRI's are scheduled. If so, there was a huge uptick in symptoms with loss of estrogen.
I was hospitalized for 2 months and lost touch with reality. My life at that time revolved around watching the Petito case and developed a delusion that my brother was lost in the forest and started calling people randomly to tell them my brother was lost. The delusion didn’t break until I saw my brother
I have so many different symptoms with ms . When I go to my neurologist I feel like a hypochondriac explaining everything. I try to tell her the most frequent and the worst of them. Love these videos thank you they are so informative and I have learned so much. I hope one day to visit your clinic with a doctor that is so knowledgeable, patient , and understands this difficult disease. Thank you dr.
I just want to say thank you. I have been trying to explain what is going on with me to family and Drs. with this presentation i can explain my problems with MS so much better.
I had high blood pressure during my initial attack - over 180/110, this past March. I have normal blood pressure typically and have never struggled with this previously. My blood pressure is now resolved nearly six months after my initial attack, and it went down slowly over several months. None of my doctors believe it is related to my MS, but I do.
I agree with you. I had a similar experience and there are some NIH studies that found connection between spinal issues and blood pressure. My lesions are all spinal cord and brain stem, including areas that regulate BP. Hope you found relief.
Thank you so much for all your videos. I haven't actually been diagnosed with MS - but I am very frustrated because i am having trouble getting in to see a specialist/neurologist here in Australia. My symptoms include tingling down the side of my face, dizziness, difficulty walking, squeezing sensation in chest and head, internal vibrations, muscle fatigue in limbs, burning pain in limbs...just to name a few. I had a brain MRI that had 15 "non specific" lesions and 10 months prior to that I had an MRI with zero lesions. But because they were non specific they said wait a year....haven't had my spine checked at all. Anyway, I'm very frustrated because I'm going down hill and I can't even get anyone to look at me. Sorry, I just needed to vent. Thanks
Bladder issues. For several years, I had pain in a certain area of my lower abdomen. Docs ruled out infection and adhesion, one doc said it was psychosomatic. Ludicrous! Definitely bladder/uretheral in location. Finally diagnosed as interstitial cystitis. I presented 3 other symptoms of MS at the time, but it was not diagnosed. That was 22 years ago and I suffered in pain and misery for 13 of those 22 years.
@@ladybugsarah6671 Ive got IC, have had for 20 years. Recently diagnosed with MS though I may have had it all the time too. Marshmallow root and uribel really helps me when it's bad as well as avoiding orange juice and spinach.
I dont have an ms diagnosis yet but I feel so sure and the fact you just said this makes me feel even more sure. I was diagnosed with interstitial cystitis at 26, im 41 now. Carpal tunnel, drop foot, meralgia paresthetica ... all separate. I wish someone would help me connect the dots.
Sir I can't thank you enough for all the information you have given freely. I was difficult to diagnose because I have rings around the lesions on my brain. the doctor's assumed I had toxo plasmosis, cancer, or maybe a tape worm. I apologize for the spelling. It took them 14 days to get a proper diagnosis. I just started trying to learn about my condition. I was diagnosed almost exactly 13 years ago. I never had the courage to learn about the possible symptoms. I have suffered many of the symptoms you describe in these amazing videos. Now I can talk to my neurologist about them. Bless you sir. You have helped me to understand so much about my own physical and mental behavior. This is a very confusing thing to deal with. Your videos have given me hope. Something I lost a long time ago. I have no idea how to express my gratitude Doctor Boster. Thank you so very much. Love and respect from Texas.
Ooh m.s. itching when will it stop! ~My favorite comment from most m.s. doctors is ”sorry that's not typical of m.s. and further more is not an multiple scerlosis symptom" Dr Erin b. I can truely say you are my favorite Dr to date. Thank you so much for taking the time to make this channel. I'm hopeful my insurance will start covering transportation again so I could see u again I clinic.god willing. * Sincerely Cyn.
I get the itching - the worst (along with nausea) - but I did find something that helps for me …… Clove Essential Oil in a cream or oil or lotion. It’s a topical analgesic and, when absorbed into the skin will numb things for several hours. It’s a break. But don’t use tons of clove - maybe a tablespoon tops (15ml) to a 1/2 cup or more (125ml) of cream/lotion/oil ….. I will often add a few drops of Tea Tree Oil in case I break my skin itching so I can possibly prevent an infection …. just an idea. Nothing else works for me. If it’s REALLY bad I’ll take some Gabapentin too.
i have several of these, the uncontrollable crying and laughing is a nightmare, my doctor just prescribed depression pills, I knew I wasn't depressed so didn't take the pills
I have had unusual symptoms. The left side of my head and face going numb. The itching especially at night, it is annoying. Buzzing in my ears. An annoying cough that often leads to hoarse voice. Trouble swallowing. The heat sensation like in the back of my neck. Cog fog for quite some time.... it would be nice to find a new neuro in FL that will help and not think I am crazy. The challenges of relocating and having to find new doctors.
elizabeth vazquez omg, the itching at nightttt!! I have had that for a whole year n only now coz of intense joint n bone pain in my entire body is my neurologist testing me for MS. N I asked 3 docs including my neurologist abt the ringing n buzzing in my ear! My eye has been twitching for 4 weeks straight now n I feel bugs r crawling on me all the time. Tremors n fluttering in muscles! I m still not diagnosed tho. Brain mri next Wednesday
I've experienced some of the unusual symptoms mentioned in your video. I'm concerned that I have MS but have not been tested. I was diagnosed with Hashimoto's during the pandemic. I kept telling my doctor that something was off but he never considered an autoimmune condition since my labs were normal. I finally figured it out and went to a different clinic to get tested for antibodies and was properly diagnosed. My story is too lengthy to post but I'm struggling in life like never before. It's my belief that most people don't understand autoimmune disease as a result I've suffered greatly. I'm not a typical complainer, I just honestly have never felt worse. I need to have a MRI, I just don't want another doctor who doesn't understand. If you have any suggestions for a doctor or clinic in the Nashville, TN area please let me know. Thank you so much, Jamie S.
Hi Jamie. Sad to read your story. It took me THREE Neurologists and nearly two years to finally be diagnosed with MS. Even misdiagnosed me with Lymes, another said it was Lupus! Yet another said I was shopping for a diagnosis(after seeing my past record of other Neuros), and was needing a psychiatrist because he said I was a hypochondriac!! I suffered for years, but kept looking for an explanation. KEEP LOOKING for a neurologist that will do the proper testing-MRI, spinal tap, EEG....my thoughts are with you.
Wonderful and informative video. Thank you. I have an unusual symptom of an exaggerated startle reflex or Myoclonus affecting mostly my left side. It is embarrassing at times. For example, Thunder, my body can literally fly up, or I nearly fall over. Watching some films, my left arm will startle over every loud sound or even visual trauma causes it. Some folks have thought they had scared me. This isn’t easy to explain to them. My neurologist has me on Neurontin. Also, before MS I was brilliant at multitasking, now I have trouble writing and listening, or cooking and someone talking, etc. All frustrating. I have gaps in talking. Etc. I have had the Fog attack you explained, recently, after having a long bout of Covid and pneumonia. I became so tired and disconnected I ran a red light and nearly did it again. It was as if, I could not connect the light and stopping. This was just a couple of weeks ago. Terrified both myself and husband. I wish you were my neurologist. Thank you so much.
My unusual symptom is smell. It started last spring. I swore my bedroom had some type of gas leak because all I could smell is this strong nail polish remover smell. It was so overpowering that it was burning my nose. Little to say, I slept in the living room with all the windows open. My husband flew home the next day and told me he didn’t smell anything. Okay I thought, maybe I’m going nutty. A few days later as I’m removing dishes from the dishwasher, I swore they all smelled like sulfur. So I redid all of them. Still, they came out the same. My husband did not smell anything. Then I saw this trend of all water smelling like sulfur. Not only our house, but my parents, and other places. I’m in between finding a good ms specialist now. But the last one and the pa prior told me that it couldn’t be a symptom. I’ve had ms since I was 14 years old. I can almost guarantee it’s my ms. Funny thing is, my first big attack to get Drs attention at 14 was consistently vomiting. Couldn’t figure it out until an MRI was done. I also have the crying attacks. First started at a Monster Truck Show with my two kids, husband, and in laws. 😂😂 imagine all the looks I got crying hysterically while monster trucks and smashing cars. My husband was so confused. I’m like I swear I’m happy.
I was just Diagnosed 2 weeks ago with RRMS and the weirdest things I had happen to me was that the whole right side of my body felt numb, only to sensations like temperature and touch. Also I had double vision vertically. made it very hard to focus on top of feeling like garbage. Thanks for this video :)
my first symptom seems to be numbness across my whole body (head then spread to shoulders then everywhere) and a loss of taste and smell sensations. No MRI yet but my grandmother had MS so likely I have it with these symptoms
I am so thankful for your videos. Even as I type this I keep turning my arms over to see if an ant is climbing on me. I have other symptoms but I'm searching for one of your videos about pain. Thank you so much 🙂
Ok 30 year veteran of M.S. here ... odd symptoms are my specialty . The day before yesterday I was sneezing throughout the day but the sensation to sneeze was only on one side of my nose .
I think the older we get having MS the more we understand. I really am thankful Dr.Boster puts many things in perspective. Me too--the rare symptoms. I honestly I could get or take something to help with choking. Had to shout out and leave you a message to another Vet of MS
Nauseous as if some just poured a bucket of nausea on my head, goosebumps down the arms and legs. Passing in a few minutes but repetitive. Almost the same but a few times it has been FEAR. All caps because it’s that powerful of a feeling. Laying down thinking my dog was going to chew my face off, or standing paralyzed in a open field thinking something it going to get me. Luckily rational thought prevailed and got me out of the field. Neither seem as often anymore, but still happen.
I had uncontrollable hiccups since i was 19, before i was diagnosed with MS, i used to hiccup at least once every hour, it was embarrassing and I didn’t link it to my MS until a few years later, i went to a doctor and they just gave me meds for stomach acid (gaviscon) but it didn’t go away, at age 24 i was diagnosed with MS, and as soon as I started fingolimod and took steroids to control my first ever attack, I noticed that my hiccups disappeared. Nadine from Jordan - 26 years old
Dr. Boster, I’ve had MS x 40 yrs with the usual course. I’m now secondary MS . In the last two yrs I’ve developed sleep apnea. Before the dx it was horrible. Now on cpap and things are better. Also over the last year I developed left vocal cord paralysis and don’t have much of a voice at all. I am unabl to have an MRI as I also have had OHS for mitral valve replacement and an ICD. This is only a portion of my hx. Love listening to u talk about MS.
I was diagnosed a little over 30 years ago. I went through a period of several years where I would occasionally smell cigarette smoke. There were no smokers in the house and I was the only one who could smell it. Lately the lower back of my scalp will itch for a couple days or so. My scalp is healthy and it comes on quickly and goes away quickly--never would have guessed it my be the MS causing it or that the smell of cigarette smoke could be from MS either. Thanks for your videos.
Thank You for sharing Dr. Boster!!! I hope NOT to have some of the rare conditions that you described but it is Very Helpful knowing this information! And sharing it with my wife!!! You are AWESOME Sir!!!
I'm relieved to seethe conclusion of itching! Fortunately my symptoms are not on the level as the patient mentioned, but I have had to wrap my legs at night on more than a few occasions because I wake up with bloody shins from scratching at night.
I've had MS for 20 years, but in the last 3 years I've developed Neuromuscular Scoliois and it has progressed rapidly and is, by far, the most debilitating symptom I've experienced.. When I first noticed it I was leaning slightly but no pain. Over the next 2 years my angle of scoliosis has progressed from 40 degrees, to 55 the next year, and now it is 68 degrees (at least that's what is was in January.) I cannot stand up straight and that's an understatement...I lean at an almost 90 degree angle when I am on my feet for any length of time.. I spend most of my time in a chair with feet elevated, or in my bed, arranged with a wedge system so I can be upright in the bed I have never been a good candidate for surgery because of the extensive spread of the scoliosis and my inability to rehab from a surgery this complex. I have no core strength after 20 years, the core strength is very weak Far from what is needed to recover from a surgery that takes two days to complete...one 8 hour surgery and a couple days later a 12 hour surgery. During recovery you need to move your body without bending your back, and rehab can be 6 months (the incision is from the cervical spine through L-5.) I still can walk, just not very comfortably. I've had my Baclofen pump upped and it does keep the spasticty in check, but does nothing to help the lean/curve. The thing that surprised me about the scoliosis was the speed at which it worsened. The radiologist had an x-ray that we took just a few years before the beginning of the scoliosis and my lumbar spine was perfectly straight and the vertebrae were spaced perfectly. Now I advise if you notice a lean to one side, get an scoliosis series of x-rays and rule out neuromuscular scoliosis. Scoliosis usually progresses a degree or two per year, but with Neuromuscular Scoliosis the disease can progress much more quickly. Mine has progressed a degree per month and sometimes more that a degree per month. So pay attention to "leans."
Wow... This is me! I've been reading about this since I came across your comment earlier this evening. Thank you for sharing! I would love to have an update if you are willing! 💕
I experienced the itching during my first and second attack. On the shoulder blades and on my chest. It lasted about 2-3 weeks. As a consequence I scratched and injured my skin. I found alleviation trough voltaren cream. Fortunately it stopped after a few weeks. Thank you so much for your work doc.
A vibrating jittering trembling feeling that goes from my chest down through my abdomen, groin and to the tops of the front of my thighs. I always wake up with it and now that it is 3 a.m. it is back. It's like an earthquake under my skin. It's horrible. Right now it's been happening for an hour. I used to think it was atrial fibrillation, a racing heart but that was ruled out. I also can't walk due to getting totally out of breath after a few steps and have to sit down. That happened suddenly one night. I was bedridden for months and now can walk about ten steps but it takes all my strength to do it. It takes me 15 minutes to catch my breath.
The weirdest symptom I have had was when feeling started coming back into my feet, I would get what I jokingly called "phantom-puddle-syndrome"; when my feet would register cold floors as wetness. I would constantly have to reach down and touch the bottom of my feet to see if it was wet and it was dry. I live with cats so I always had to check. Luckily that one's gone and now I have foot cramps on a daily basis (escpecially when I go to sleep, annoying) which cannameds are really knocking out now. I just did the full list and it's pretty impressive: days of essential tremor, "the zap" up the spine, speech and swallowing problems, lung spasm, Bell's palsy, paraesthesia on left side, burning right thigh, eyes not matching, bladder and bowel problems, tearing for no reason, tearing in one eye only (super weird), depression, burning and cramps in feet and calves, compulsive scratching, depression and cog fog, couldn't turn my head to the left, cerebellar tremor in hands when doing actions, and my weirdest was dizzy with my eyes closed. Mind you, I have luckily never had ALL of these at the same time but have had some combination of these over the years (since 2007).
I get this as well. A feeling of wetness around my left foot, as if I'm standing in a bucket of cold water. I can literally feel the cold water but my foot isn't even wet. For a while I tried to pretend it was a spa treatment in an effort to change my brain's narrative about it being painful but that was not successful. More gabapentin seems to be the only thing that helps.
I have MS. One day I was suddenly hit with a severe form of OCD. Literally one moment I was fine and the next I wasn’t. I thought I was losing my mind until I got an MRI showing an active MS attack. The symptoms improved greatly with IV steroids., although unfortunately not enough and it’s still a struggle for me. OCD is brutal 😓
Hang in their buddy, I’m going to get tested in a couple of days. I’m worried but I know the Lord Jesus Christ has my back. Trust in the Lord for everything
Yes sir, my humor has been gone for years, I would say that it has been more than a decade. I was diagnosed in 04/2022, starred Rebif in May. I was completely shocked, and what a relief it was, when in June I was watching a new sitcom and I felt my humor rise from deep within, much like a balloon filling, and then it burst from me. I was so relieved, I just couldn't believe it and I really don't know how to explain to you about this, I cried due to the relief.
When I was first diagnosis, my hearing dropped down to 20% in both ears. I do have hearing loss but that was extreme. When people talked to me, it sounded like the teacher from the Peanuts cartoon. Thankfully I regained my previous level of hearing after a round of steroid infusions. Also I have and randomly still experience that horrible itching you referred to as well as the cog fog. There were times that I had no idea what I did throughout my day and it scared me. Also I have trouble walking sometimes, but it's weird because I can drive a car fine but not walk. I literally have to keep saying left, right, left, right in my head or I can't walk at all. Even when I would do that, my walking was very slow, difficult, and robotic. Those are some of my experiences that my neurologists thought were unusual.
Great video! I'm 64 and I take Copaxone. I wasn't diagnosed until I was 57, so I was always confused about my clumsiness and my sanity. I had visions that came true when I was 16. I heard a voice since I was 9. I cried all the time and was bed ridden for 4 months when I was 18. I'm doing really well now, but I do have a lot of lesions. Sometimes I have a tooth ache real bad, but I don't even have any teeth. Maybe it's a nerve pain, but it stops when I use Ambesol. My eyes twitch and I jerk right before I fall asleep. There are times when it feels like thread is rapped around my toes and I spend time trying to get it off. Then I finally remember it must be an illusion from the MS. IDK. My neurologist is very brief and says very little when I ask questions. It feels like he's on a time schedule and rushes through the visits.
Thank you so much for discussing “Status Epilepticus.” This exact type of seizure affected me Christmas Eve 2017. Three days before it occured, excruciating pain gripped my quadriceps. By day three, my then-husband, noticed I was holding-the bedside while my right leg continuously stomped the floor. He called 911. What was scary for me, was seeing “snapshots” of events then blacking-out. I literally thought I was in a nightmare. According to my ex, my eyes were open the entire time, but when I tried to speak, nothing intelligiblele was spoken. “The lights were on, but no one was home.” The hospital/ER doctors were clueless about MS. Brute strength must be a trait of this type of seizure, as it took four male nurses to hold my legs for a catheter….I don’t remember. All I know, is I woke-up in ICU 24 hours later wondering what had happened. Later on, I learned it took seven IV doses of Ativan to stop my seizure. It’s the most terrifying MS experience, ever. What the brain decides to do when attacked is bizarre. Thankk you, again. Great, informative video!
My daughter has been diagnosed with MS during Covid. Earlier this year she underwent treatment with Lemtrada. Her 1st one. She is 45 years old now. I am watching your videos regularly, and I can recall when she worked in London many years ago, and I visited her, she did not feel well, tired, and really had a problem skin. We went to a nearby Chinese doctor practicing in alternative medication, she immediately said, "my daughter has too much body Heat" at the time she was 21 years old. Is that a possible symptom of MS ? Your videos really help all of us to learn more about this disease, and how to live with it. Much Appreciated
I've experienced the laughing and crying uncontrollably. The laughing 1x for about an hour. The crying would last for a 1 1/2 days for about 2x a year for several years. All before diagnosis. After diagnosis and on various treatments I do not have this issue. I never mentioned this symptom to Doctor but learned it is a ms symptoms
#MSWarrior
Jennifer Miller ‘
I have this and when I’ve had it in front of doctors they acted like I was crazy. 🤦🏻♀️
I have 9 years with MS and I will like to be an artist but the pain in my body make limitations on performance and to continue music career, the medical marijuana has been very imp causing a positive impact like a creator and to reduce a lot of inflammation but the pain is a nightmare in my life, ua-cam.com/video/wAiWDK0o4Yo/v-deo.html
Psuedobulbar effect
I've lost my sense of humor because I'm too wrapped up inside my own head trying to understand what's happening to me 😢 I'm homesick for myself.
Kari Short Keep holding on! You expressed what I have been feeling so well. Profoundly accurate!!! I feel so deeply connected to this sense of not being able to get out of my own head. I would like to offer you a bit of hope. I lost my humour for months but it did come back and I hope you experience the same"recovery!"
I’m sad that there are other people out there that feel this way also.
Dear don’t let MS take your life from you try to ignore and watch humorous movies 👍🏻
Describes what I feel but I couldn’t put into words myself 😪
This how i been feeling past couple of months
i wish this doctor was here in my town
Thanks g c
Me too as I think I might have ms and my doctor said he doesn’t think so
Same here!!!!
Me to sucks
Yes I would love him to be my doctor ❤
Hearing sounds that no one else does. Especially at night when it’s quiet.
I have had MS for 24 years and I am still learning. I hear sounds all the time and often times music. My doctor doesn’t know what it is
@@FurBabyMommaFureva I hear maracas…lol-but not lol… gotta keep the humor ☺️
@@sher.by.grace87 Neuroplasticity can help, focus on external sounds not the somatic ones - and persevere with that sense of humour!! 😃
@@FurBabyMommaFureva I hear music boxes
@@MistressKarma6969Woah! 👻
I am a 57 yr old black man . I was diagnosed with MS a week ago. One thing I suffer from besides constant pain up and down my spine, neck and back, is waking up not knowing where I am or the time of day etc.
Such a fresh diagnosis! I hope it gave you some validation and answers more than anything. I'm sorry for your pain :(
Thank you Dr. Boster. Many of the unusual symptoms you described is what I experienced before my diagnosis in 2010. I was actually diagnosed in the psychiatric ward of a hospital, after a 2 week stay. I had psychosis, erratic behavior, laughing spells, cog fog, depression, and I'm having the itching going on now for past 2-3 years. In the psych ward, a neurologist/psychiatrist asked me to explain my symptoms once again and she ordered an MRI and spinal tap and diagnosed me with MS. It was a long, hard scary journey because for almost 2 years every hospital was saying I was having a mental breakdown. What you are sharing is true. Thanx! 😁👍
I’ve been itching for 16 months. I need it to stop.
A tickle is a stimulated pain sensor. When our nerves are damaged and still trying to fire, it sometimes comes across as cold, burning, pain or itching. I have lived for years with the idiopathic (unknown origin) itch for many years. Make sure you are using everything hypoallergenic. I used Benadryl until I had to take Norco for pain. I use a soothing lotion, like gold bond excema. I also do dry brushing which is great for circulation. I hope this helps someone. There were no drugs or help when I was diagnosed.
When I was first diagnosed, I had so many symptoms that I needed to write them to ask to my neurologist if it was normal. Some of them was surprisingly weird : I smelled cigarette smoke for 2 consecutive weeks (yummy), I also had horrible itching on both legs at the same place. Sadly the neurologist told me with confidence that the half of my symptoms that I described was not MS but probably "in my head". He took me as an hypochondriac and I felt misunderstood and alone. Sadly, he was an MS specialist. Your UA-cam videos, FB groups, and research studies made me learn better what MS can really do to my body.
You struck a nerve for me with the hypochondriac remark. For the past 3+ yrs I've been telling my doctor all the symptoms I've been having n experiencing and was brushed off as psychosomatic/hypochondriac until I had a stroke at 49yrs old, which was caused by an inflamed brain lesion along mri finding 7 more. I went from zero support for years and told its probably your hypothyroidism and in your head to Within a month a team of doctors, MRI's, tests etc.. who all of a sudden were like oh these symptoms are obvious 😒
I have the itching too. I understand how many Doctors do not understand the systems we share with them. They act like we are making it up.
Itching on my right foot was my first symptom years before diagnosis. I literally scratched it raw then still scratched the raw flesh.
It was like my foot bones were maddeningly itching and I couldn’t relieve the itch.
I couldn’t sleep with it. It went on for months.
My doctor said it was an “Itch Scratch”rash that I was causing myself by scratching!?
Then after time,he said it was Stress, then depression..............
So frustrating. As a woman I felt not believed, seen as hysterical (I’m really chill)
At the same time, I had 2 separate attacks lasting for 3-4 months of one sided torso and arm numbness - also “stress” and a “trapped nerve” (at 20 years old!?)
I then had a bout of 3 months of wellington boots of pins and needles
Then two weeks of Vertigo where I couldn’t lift my head without vomiting and had to crawl on my hands and knees, eyes closed, to the bathroom as world was spinning.
That was “A Virus” and was followed straight by two weeks of double vision
I was finally diagnosed RRMS after 3.5 years when I lost joint position sense at the arm
Let me guess... You're a female? Doctors never call men hypochondriacs or tell them their issues are in their head.
😢 I'm sorry for you. Hang in there!
My legs, when I'm resting in bed if feels like they're "vibrating" sometimes uncontrolable movement.
oh yes, I have the biggest KICKS happen every night! So much more than just normal jimmy legs, its like a 45 degree angle kick!
I had the movements too. As I started taking Magnesium it went away. I don‘t have MS though.
I use Baclofen for my RLS. Awesomeness
My whole body feels like that sometimes
I don’t experience this, but I have read a good amount about weighted blankets that can help with RLS!
I'm so glad I found this video. I have progressive MS and in June of this year I had psychosis and they put me in a mental hospital for nine days and diagnosed me with a mental illness. I'm 41 years old and had not previously experienced psychosis, just depression and anxiety. Now I know I need to inform my neurologist about the psychosis and hope he knows it can be a symptom of MS. At the hospital, they put me on a medication that's used for schizophrenia, which I'm still taking. I'm certain it's the MS that is causing the depression, anxiety, and other mental quirks. I see my neurologist in 10 days. Thanks for this video. I love all of your videos.
It feels like you have bugs on your skin..
Totally
Im itching all the time
Yes. I always feel I have a spider on me. LOL. Makes ya crazy. :)
It is so helpful to hear others speak about the "bugs crawling" sensations!
Has primary biliary cholangitis been ruled out? I also have that as another auto immune. disorder. This was the source of my itching. It's pretty rare to have MS and Primary Biliary Cholangitis. There's about 350 worldwide with these two together.
Swelling: Hands, feet, face, stomach.
Yes, what exactly causes this fluid retention? It's horrible.
Is this MS? I get this too even off of the steroids.
Me too!😔 I forgot to mention this in my comment above.
I hate this x
I have been getting swelling on my face, sholdes and back and one time my tongue.. it comes on suddenly and goes away just as suddenly I'm trying to figure out what's going on and my research has brought me here.. I also get numb when laying down and been having pain and foot problems that making it hard to walk..
I was diagnosed with MS a few months ago and this entire experience is rare and unusual for me. This video was extremely informative and necessary. Thank you for the information doctor, its much appreciated!
what were ur symptoms
@@mishaalzk6033 My initial symptoms were balance and coordination problems that were persistently getting worse in a short amount of time, numbness in my arms, legs, feet and toes, brain fog, sharp shooting pains in my cervical spine (neck) whenever I put my head down, I would randomly go numb from the waiste on down. All of these things happened in the beginning.
You have no idea how grateful I am that you made this channel! Thanks so much Doc!! Have a beautiful day!
My pleasure!
I haven't been diagnosed with MS, but my doc wants to run tests for it.
A weird symptom I've been experiencing for years is when my body heats up when I'm doing anything active, like cleaning, going for a walk, etc. My muscles and skin feel really hot and start going numb, sometimes I get a vibrating sensation in my hands, then it becomes harder to move around. As soon as I sit down and my body cools off it gets better. I've been experiencing numbness for years it seems to come and go, but it gets way worse when I'm doing anything active. So weird, even my tongue and throat will go numb sometimes, the numbness seems to be worse on my left side. This is all accompanied by extreme fatigue, trouble keeping my balance and even walking at times, blurred vision, brain fog/ forgetfulness. I'm also constantly dropping things. Very scary and frustrating, I'm hoping I can get some answers soon.
Thanks so much for this video!
Update?
Update? If not ms ask your doctor about functional neurological disorder
I have that all the time with heat and I have had MS for 24 years
Sounds much like me, I was diagnosed a month ago. My neurologist says I've had it 2 decades or more. It's a very strange disease that has made my life terrible for so long and I had no idea. It wears your soul away to see your life crumble to nothing, powerless to make positive changes. Heres to a better tomorrow, I hope you have found a treatment that helps.
Update? I have NOT been diagnosed with MS, but I have similar symptoms.
I have the MS fog. I was diagnosed with Bipolar disorder before I was diagnosed, I told the doctor about the depression and that I couldn't laugh anymore, they thought I was crazy. I ended up having bouts with double vision and the eye doctor is actually recommended I see a specialist, so he contacted my doctor and then I was sent to a specialist and was diagnosed with MS. I have the heat sensitivity. I have the bouts of itching that never ends until the flare subsides. I also have diabetes and I've noticed that if my sugar gets too high, it can also be a trigger, or I think it does. Before I was diagnosed I thought I was getting Alzeimers, but it didn't affect me too often. I do have steroid therapy for symptoms and as long as I take all of my medication, the symptoms are manageable. Thank you for putting this information out there.
I cried watching this video and the pathologic itching video as well. I feel like you were describing me specifically the whole time, yes all the symptoms, not just one or two. I have been to over 100+ appointments this year since January 1st and I'm really starting to believe that I am the crazy one 😔 but my local neurologist checked for MS to rule it out and so far they say my brain and cervical MRIs are normal. As I'm writing this the electrical impulses in my head and down my neck and arms are so bad I can hardly stand it. I'm so sorry if this is TMI for a comment but I don't know what else to do. Thank you so much for the time and effort you spend on your videos as they are very educational and I do understand they are not in place of a medical diagnosis.
Cinnamon challenge mike
So glad you have highlighted these issues because there is not a lot of information out there for us. It is so frightening when odd symptoms appear that aren’t discussed often enough, or even recognised as MS symptoms. Thank you so much. 🙏🏻
you are very welcome new jersey!
Thank you for reassuring me about vomitting, my neurologist said that it wasn't MS' fault that I lost 25 kilograms due to unstoppable vomitting. I was lost, so I thank you, from the bottom of my heart !
you are welcome!
Startling very easily. Stuttering.
Have not heard these addressed. ANYTHING will make me jump and hard. It's painful! Thanks again Doc! Lo in Fl
WY Flo, thanks for watching! And thank you for sharing Lo, that sounds tough.
Lo Merritt this happens to me too, but not all the time.
Lo Merritt I have this too. It feels like the flight or fight reflex, but over exaggerated, and comes on suddenly when it’s not required. Literally I will scream if someone walks past me from behind in the street or I turn a corner and someone is the other side. I have frightened many a poor soul by screaming at them. So jumpy it’s ridiculous 🤯.
ugg!
Darla, NJ, thanks. Yall are the first to validate that. Yes, someone around corner or pass me in store...GAAAA! People will apologize for scaring me. I tell them it's me not them. Funny as I like scary movies, etc. This is different and not a fun sensation. #WEREALLDIFFERENT
I wish I could see Dr. Boster , too! I loved this discussion today🧐I have the itching but only intermittent-yet has been going on for years. Am so glad to finally understand why! Sometimes I have the crying- usually around a spiritual topic . Older , former nurse and am past the age of receiving the treatment they offer the younger clients. Praising the day I found you! I’ve learned so much and have found relief in the experience of “ learning together “Priceless and Comforting the Compassion you share ❣️
Thank you for your easily understood detailed information. I am still active after 40 years.
Ah yes, the ITCHING!!! It’s so random and so incredibly frustrating! Benadryl sometimes helps, but I sometimes wonder how much of the relief is psychological, since there doesn’t really seems to be a good reason to be itching to start with.
Thank you for sharing Megan. Pathologic itching in MS is often from a lesion interfering with sensory processing. I see this most often with spinal cord lesions.
Aaron Boster MD
I was undiagnosed/misdiagnosed for about 20+ years. When my neuro looked at the first head and spinal MRI that I’d ever had (at age 40), he said something to the effect that it “lit up like a Christmas tree”. There are far too many spinal lesions of varying ages to count. It wasn’t until I started having trouble with walking and balance that I became very concerned and was finally able to get to the bottom of it. It makes sense that the itching is caused by a lesion, but I find it strange that it comes and goes so randomly. Most of my other symptoms (particularly pain and neuropathy in all four extremities) are with me on a constant basis. It seems to be worse in the evening or after a shower. If the itching is primarily in my arms, am I correct in assuming they are probably cervical lesions that cause this particular symptom?
Yes that's the most likely localization!
I have bumps and wide spread itching and pain..... I sometimes even walk as if I'm drunk (I don't drink) I get 'cog fog' as well.... I'll be talking with someone and all of a sudden it sounds like they're speaking a different language.... frustrating
I itch and scratch till I bleed and bruise. It's awful. There's no rash or bite, but I cannot stop scratching. Heat seems to exacerbate it, but it occurs whenever it wants. I'm in the diagnostic phase so I don't even know if it is MS, but it sure does act like it. Thank you, Doc. Every little bit of info helps.
Worst symptom for me at the moment is feeling like the physical embodiment of white noise while trying to sleep... feel like I’ve been plugged in to a power socket! - so frustrating and doesn’t help with general fatigue. Really interesting video, thank you 😊
Hi, I suffered with the same thing,try tapping the back of your head with the tips of your fingers it worked for me 😊
So you guys have MS???
Light sensitivity is increased and I also startle real easy.
Me too. When I had my first episode someone just talking from behind me would make me jump out of my skin. The sound of something being dropped on the floor would make me scream out loud. Usual every day occurrences caused me to suddenly feel absolutely terrified!
Me too, I haven't been diagnosed yet though.
I use to startle soooo easy too!
Gerdog stenc I also have that but the two come and go and always come together
Same here
New subscriber . Very new to MS. Optic Neuritis started it all. Itching, fatigue,balance, Vertigo,etc soon followed. Your channel is helping so very much.Thank you so very very much.
Howdy Jaci! Your comment just made my day!
Dr Boster , I am binging on your channel tonight instead of Netflix.......😀
wow that is really cool!
Every symptom I have had with ms has never been the same diagnosed 2002. From burning, tingling, neuritis, speech, tips of my fingers and toes sleep, body right side, cough, summer, left leg, lower back pain etc.
Leslie Ann im dealing with this now I havnt been seen yet all of them
I was diagnosed chronic fatigue in my 20s, fibromyalgia in my 30s, a mental disorder I forget the name that you make yourself sick in my 40s or mitochondrial disease, now atypical MS in my 50s. I have vertigo, pure autonomic failure, lost kidney to hydronephrosis, Pots, abnormal evoked potential tests, psvt, previously ibs, reactive hypoglycemia, toxemia with both pregnancies, CEBS, removal of gallbladder, cervical spine issues that cause nausea and overheating, metobolic syndrome, hyperhydrosis, six brain lesions, neuropathy of limbs, blurred vision and elongated lights at night that comes and goes, extreme body stiffness, and now spacticity in my right knee which causes extreme pain, and foot falling to side when laying down, eczema on feet and hands. Cry at inappropriate times and don't feel sad inside. I still feel like something is being missed, and my whole life had Drs think they know, then when tests or symptoms don't add up, they treat me like I'm crazy and give up. The sad part is, my youngest daughter has even worse symptoms to the point of hand tremors in her twenties. They treated us her whole life of symptoms like I had munchousers. It has made her reluctant to seek help as an adult b cuz we were treated so bad. Now they have her on anxiety meds for her hyperhydrosis and tremors. It is not anxiety. I feel it's too late for me. But I so want a diagnosis so my daughter doesn't spend her whole life not being believed and treated bad when she asks for help.
I sometimes get the sensation that hot liquid is being poured on my leg. It takes me a moment to realize nothing was spilled on me. I also have the sensation that I am having tremors in my arms or legs, but my muscles are completely still. I often feel a low level buzzing in my arms and legs which is annoying when I'm trying to concentrate. I could keep going, lol. I don't think my neuro believes many of my symptoms, which is almost as frustrating as the symptoms themselves!
That sounds super unpleasant Dana. I've heard many other patients describe similar "liquid poured on my ___" before.
I get this in different parts f my body. Sometimes the opposite like Ice being poured on my head
I so get the sensation of the hot water on your leg. I have a similar thing. Mine feels like I have bag of ice laying on my leg. Then it starts to tingle and then gets fire hot and painful. The area of my front thigh where this has been happening for months has become completely numb.
TY for sharing with us Tammy! #WeHaveMS
I've had this happen before too...it felt like either hot or cold liquid for me. I also often experience the feeling like I have bugs crawling on me. I'm assuming this is a similar type of reaction with the nerves.
Dr. Boster, love your analogy of our spinal cord, the SUPER HIGHWAY. Please continue to share your knowledge and observations. It's nice to hear a medical professional provide the insight we don't get to ask during our visits to the neurologist. Many thanks. Cindy
Thank you for doing this video! I was diagnosed in March of 2018 after almost 20 years of troubling symptoms that were dismissed as mental health issues or injuries from a later car accident. At 13, I was diagnosed with psychosis after several episodes of not being able to distinguish between reality or not. These episodes led to me being hospitalized 3 times within a year and a half. The following year at 14, I had an incredible and sudden onset of physical symptoms that were brushed of as severe panic attacks. I would describe it to others that I felt like I would have a heart attack, stroke and seizure all at once. These episodes would last hours and happen daily and I was put on several different medications that did nothing to help.
I'm not going to explain close to 20 years of symptoms here, but let's just say that I have a lot of the unusual symptoms as opposed to profound physical disability. That's not saying that I don't have physical symptoms, but the ones that I do have are weird and not really explained thoroughly to me. I have no seen spinal lesions, but a large amount of lesions on the brain. I have exacerbations where full body pathological itching is one of my main symptoms and it is horrible. These itching episodes will go on for days to weeks and make it almost impossible to sleep. I get bouts of extreme, sudden cog fog. Very easy startling. I haven't had an episode of psychosis in a few years now, but they were still happening.
You are setting the bar really high. Im so impressed you are offering your expertise so freely. I like to learn about all thinks health related. I'm just a lowly telemetry tech who enjoys learning.
you're NOT "just a lowly telemetry tech." What you do is super important and I appreciate it. Please don't belittle what you do!
He will be blessed in abundance for doing this. You get back what you give! Reap what you sow.
Thank you for the channel. My sister was recently diagnosed with MS and I want to learn all I can about the disease in order to support her as best I can. Subscribed!
TY for subscribing Slynn. Ring the notifications bell and it will alert you with each of my new videos! I try to publish a new vid once weekly (but oftentimes get excited and publish 2 or more! opps!)
Thank GOD for u
Agree 100%
uh.. that's insulting. you should say "thank YOU for you".
@@mcdeigo I love it!
I'm a nurse and get tired of people who suffer give an imaginary deity credit when its doctors and nurses that help people. More so, the pharmaceutical companies that create the real help. If we left everything up to faith, there would be an epidemic of death because prayers don't work. That's doing nothing without doing anything at all. We don't see faith hospitals curing people. Scientists and researchers are our heroes. Preacher's are succubus con men.
@@angelahall4402hilarious. Have you read all the comments about being gaslighted by the medical field about their symptoms?
I have many cognitive issues. I forget short term memory, I forget my words, while talking, they come out wrong or backwards. Things is, people around me, are getting sick of this from me, and just get annoyed. Having a very small amount of people, who do care,read up on it. It hurts when people are fun of me. XoXo’s
@Kris L same here, I am concerned that I may have early onset dementia. But I literally just try to joke it off to my fam, but deep inside I'm scared to death!
I have forgotten what I was saying mid-lecture on content I've taught for 20 years.
This is how I feel too because sometimes when I'm talkin to people certain things don't come out the way it's supposed to be but sometimes I feel like I can't think straight. And luckily my family and friends understand what I be trying to say when I talk to them and sometimes I stutter and I do forget what I want to say half of the time
Andrea Wheatley you should dump your friends they have no love or patience for you, narrow them down, I carry a think book, I’ve called it that, it’s just a pretty book to write thoughts list n words too! 😀 hope this works for you x
I am suffering from the same symptoms. My teenage sons have no patience with me to the point that they would rather not talk with me. They are getting slowly better at being patient with with me. Also, even though I have lived in the US for over 25 years, English is still my second language. I loose words mid sentence and can’t remember how to say it neither in English, nor my mother tongue. Very frustrating.
Thank you, I haven't been diagnosed with MS but this has helped me in compiling a list of symptoms for my medical appointment, symptoms I wouldn't have thought were connected with MS
Same here!!! I don’t need a diagnosis to know I have it though. That, I have no doubt of now that I’ve researched and educated myself on the subject the last few years. I probably know more than the horrific local Drs here. All the awesome caregivers retired from Covid. Nothing has been the same in my area since!
I experience several of the rare / unusual MS symptoms you discussed. It is so frustrating. I am seeing a new Neurologist in Feb...praying he is as attentive to details as you are. Praying for help with my MS
Best of luck Nicole, you got this!
After I had my youngest child, I almost immediately lost all sense of taste and smell. When I mentioned it to my OB/GYN, he said that it sounded like my wiring was screwed up. My MS neuro later confirmed that was caused by MS and it's very common to have a flair up after giving birth.
I also have this weird cough that plagues me in the evening hours. After undergoing numerous tests, CT scans, and even a referral to a lung specialist, my neuro said that my chronic cough is likely centrally mediated (whatever that means) and caused by lesions in my cervical spine. No one that I have spoken to on social media, etc. has ever heard of this issue, but I've had several neuros confirm that MS is the likely culprit.
I've decided that I was weird before MS and it's only right that I'm still weird with my crazy symptoms. 😜 I'm very blessed that I'm relatively healthy, not in pain, and have all of my mental facilities (most of the time).
Thank you for sharing this topic with us as it's greatly appreciated. Patients (such as myself) sometimes need someone who has knowledge and experience to talk to regarding this crazy disease.
You sounds like an #MSWarrior Athena! Thank you for watching and thank you for sharing here. Did the sense of smell every come back? Has the coughing continued?
The smell and taste eventually (5 or 6 months), but not in time to smell my baby's "new smell". The owner of the Thai restaurant I go to was convinced that I was going to cause "holes in my gut" when I kept asking for hotter and hotter, but it was only because I just wanted to taste something...anything really. My cough has never abated unfortunately. Thankfully my regular doctor prescribes medication with hydrocodone, as that's the only thing that works. I'm so thankful all of my doctors work together on controlling my MS issues!
I'm glad that at least you regained some smell and taste back! Thank you for sharing with us here Athena. I and others learn a lot this way!
Before diagnosis, I'd lost much of smell. Since going on medicine a year ago, it has come back somewhat.
Aaron Boster MD You're doing a wonderful thing for these people, many that may suffer alone. 👼
Thank you for making these videos, Dr. Boster. My
first husband hid his MS from me...I found out from his mother after we had already spilt. He has to live with her now permanently and he’s lost of most of his function. He has some of these rare symptoms...didn’t realize they were rare. I’m still trying to make sense of it. From what I’m learning here, his symptoms might not be so severe if he JD gotten treatment earlier. He was distrustful of doctors, which ive commented about on one of your other videos. I wish he had had someone like yourself who took time to explain things.
I have been diagnosed with MS for over 30 yrs. I have most of the regular symptoms for MS. I also have lost my sense of humor. Never before have I had any doctor related that this could come from MS. What a relief to hear this in that I don’t feel like I’m going crazy. Thanks doctor.
So I watched this and was all sad and whatnot, worrying about getting these things some day, but then the chickens show up and I felt better watching them. Thanks for that. :)
Pseudo bulbar effect - crying like my heart is broken; when meeting with a psychologist at hospital - she panicked !!!
not fun meldeak!
I have had the unknown itching that lasted for months. I haven’t had it in quite a while thank god. you have given me validity on a few symptoms I was told had nothing to do with MS like the itching and cog fog. Again I love your videos. You should come to NYC and do a Q and A.
Kapluchi, thanks for watching and thanks for sharing. I have an idea- you and I could do a Q and A live on UA-cam! You get a list of questions, we both get on UA-cam live (somehow) and you ask them and I answer them real time. What do you think?
The cog fog! Along with stroke like symptoms sent me to the hospital last year in July.
The intricate revelations of neurological challenges is astounding. Thank you Doctor. Be 🙏 Well
YOU ARE THE REAL DEAL YOU REALLY UNDERSTAND MS PEOPLE MY HEART GOES OUT TO YOU HELL YOUR A DOCTOR WHEN I FIRST GOT MS I COULD NOT STOP LAUGHING DIDNT NO WHAT THE HELL WAS WRONG WITH ME CAUSE ITS NOT FUNNY
Alright, here goes. I have persistent itching mostly on the left side of my spine in the mid back area. I also experience lots of shakiness in my legs. Sometimes I have tingling and numbness in my fingers and toes. I also experience frequent myoclonic seizures ( around 20 to 30 a day. The cognitive fog you mentioned resonated with me. A couple of years ago I was in bed so long I developed 2 bedsores. Headaches. No money, no insurance so I just deal with it the best I can. BTW. No official diagnosis of MS, but 5 out of 5 doctors have said they feel it’s MS. thanks for listening
Thank you so much for posting this video!! I have weird hearing loss in only my left ear and no one was able to figure out why. I also had leg numbness and sometimes severe pain we just figured was a back injury, so grateful to finally find a dr that looked further because I guess hearing loss isnt common. She said last she had never seen an MS patient with it.
Hearing loss is indeed a rare MS symptom. Super frustrating! #WeHaveMS
I have hearing loss in my left ear from antibiotics, Cipro and Bactrim but any of them can do it. I know that's what caused it because I've taken antibiotics a lot and each time my hearing in my left ear got worse.
The Joker, if he were real, would be diagnosed with Pseudo Bulbar Affect.
I wish you were my Dr. I learned so much about my MS thank you ❤
PSA is something I have wondered about. My doctor wasn't really impressed with the idea, so we didn't discuss it much. But I wonder- does it have to be sobbing? Is it only in intensity that matters, or can frequency count as PSA? I don't sob, but I cry ALL. THE. TIME. Happy, sad, angry, doesn't matter. I cry probably 4 or 5 times a day, I have never been depressed. It is uncontrollable and it effects my relationships and work. It's constant though, there is no flare up or remission for it, I just cry all the time. It's been this way since my 20s (I'm 45 now, diagnosed at 41). Also, THANK YOU for making these videos. They help me so much!
Yes, the vomiting and the itching. No one could figure it out but now it makes sense that I’ve had two flairs this year. I honestly felt that was going on and am relieved to hear you teach on this.
I itch all the time😳. Makes me have severe anxiety 😢😢
Really enjoyed this one!!!! I have the zings in the head,smells trigger nausea and vertigo,I have Menniere's. Currently watching the history of the Mayo Clinic on PBS and I saw your upload and now I'm binge watching what I've missed!!
Thanks AJ's HR! Thank you for sharing your experience and for supporting the channel! #WeHaveMS
I've experienced the itching, vomiting, confusion, and psychosis! The itching was by far the worst I scratched myself until I bled multiple times
I also had phantom hairs that I felt all over my body when there were none
It’s been going 16 months straight. I’m so desperate for it to stop.
Dr Boster,
I have no idea if you would go this far back with a comment, but in this video, you asked for rare symptoms. I have been dx w/ SPMS, and I am older than most in first being dx w/ RRMS. I was falling sometimes 10+ times per day. My neurologist prescribed COPAXONE and, for several years, took daily injections. The first injection miraculously halted my daily falls. YAY! Throughout the years following, I was dx w/ SPMS. Shortly after, I had a complete blackout. I remembered I'd left the milk on the counter to defrost & didn't want to defrost too quickly. I'd meant to refrigerate it before retiring that night. So I was in my room - stood up - the next I remember I was laying on the kitchen floor & my dog was licking my face. Scared me to have that experience but didn't report it to my neurologist because no broken bones no soreness although I did have an indentation on my cheek bone from the tile in the kitchen. It felt bruised but nothing bleeding so went for about another year and randomly experienced another blackout also in the kitchen. I remember facing the pantry and then poof on the floor again, my dog licking my face. Still no broken bones. Didn't feel hurt or bruised or broken. Thought another fluke & kissed it off. However the same year had another blackout. Was getting off the couch then poof on the dining room floor. All this time, I'd been caring for my Mother who was suffering from COPD stage IV. The next blackout occurred in my br. I needed to let my dog out to pee. Got out of bed and poof found myself sliding down the patio door I was going to open to let my dog outside. From my bed to the door is only a few steps but I couldn't remember walking to the door, only sliding down it. During a course of only a few years had several blackouts. I reasoned they were created from all the other stresses in my life. Had problems with my only child, several very close family and a ery close friend had passed away all while caring for my Mother. Since she couldn't take care of the services for my youngest maternal brother, I took care of this 2 years before she passed away. I'd put so much on that back burner and didn't tell any doctor of these occurrences as I was on auto-pilot for so many years. I haven't had another blackout since 2021. It just bothered me to have experienced these. I am on line with the national MS society and asked another source if any one ever experienced these blackouts having been dx with MS. I had one response from a man dx w/ PPMS who claimed he had experienced blackouts as well. All that being said, is this one of those rarities? My MRI's at the time all determined okay. < which I find is very strange as I have al.ost every symptom I've read symptomatic for MS patients. What is your take on this? No blackouts for almost 2 years now but do suffer severe neuropathy in both feet and both legs - migraines-etc etc etc. I'd like to know what your take is on this. I have SPMS yet most symptoms.
I hope to hear what you have to say regarding this. Jonni
best information i have ever heard. especially about various medicatins and symptoms.
Yesss, I have .omg . The itching, vomiting, brain fog dementia, etc
Thank you Doc for taking the time to do this video as well as all the others I watch them all. Will you please make a video that addresses how menopause affects MS and what we can do about it. I believe this is what has affected my mobility in a bad way 😔 If I lived in Ohio I’ll definitely be in your clinic!
Thank you for watching and thank you for the suggestion Terri, it's a good one. I'll certainly add this to my list of topics, thank you! #WeHaveMS
Hi I have my. Vision slightly and I just started getting muscle spasms and often like 4 to times a day my leg will give out I also noice tingling at night that wakes me up.
@@AaronBosterMD This would be great. I have not been diagnosed yet but MRI's are scheduled. If so, there was a huge uptick in symptoms with loss of estrogen.
I was hospitalized for 2 months and lost touch with reality. My life at that time revolved around watching the Petito case and developed a delusion that my brother was lost in the forest and started calling people randomly to tell them my brother was lost. The delusion didn’t break until I saw my brother
I have so many different symptoms with ms . When I go to my neurologist I feel like a hypochondriac explaining everything. I try to tell her the most frequent and the worst of them. Love these videos thank you they are so informative and I have learned so much. I hope one day to visit your clinic with a doctor that is so knowledgeable, patient , and understands this difficult disease. Thank you dr.
I just want to say thank you. I have been trying to explain what is going on with me to family and Drs. with this presentation i can explain my problems with MS so much better.
I had high blood pressure during my initial attack - over 180/110, this past March. I have normal blood pressure typically and have never struggled with this previously. My blood pressure is now resolved nearly six months after my initial attack, and it went down slowly over several months. None of my doctors believe it is related to my MS, but I do.
Glad your BP is back to normal Arella! #WeHaveMS
I agree with you. I had a similar experience and there are some NIH studies that found connection between spinal issues and blood pressure. My lesions are all spinal cord and brain stem, including areas that regulate BP. Hope you found relief.
Thank you so much for all your videos. I haven't actually been diagnosed with MS - but I am very frustrated because i am having trouble getting in to see a specialist/neurologist here in Australia. My symptoms include tingling down the side of my face, dizziness, difficulty walking, squeezing sensation in chest and head, internal vibrations, muscle fatigue in limbs, burning pain in limbs...just to name a few. I had a brain MRI that had 15 "non specific" lesions and 10 months prior to that I had an MRI with zero lesions. But because they were non specific they said wait a year....haven't had my spine checked at all. Anyway, I'm very frustrated because I'm going down hill and I can't even get anyone to look at me. Sorry, I just needed to vent. Thanks
Any updates ?Did you get diagnose?
Bladder issues. For several years, I had pain in a certain area of my lower abdomen. Docs ruled out infection and adhesion, one doc said it was psychosomatic. Ludicrous! Definitely bladder/uretheral in location. Finally diagnosed as interstitial cystitis. I presented 3 other symptoms of MS at the time, but it was not diagnosed. That was 22 years ago and I suffered in pain and misery for 13 of those 22 years.
Is Interstitial cystitis an MS symptom? My daughter has that and has had other symptoms Oh wow.
@@ladybugsarah6671 Ive got IC, have had for 20 years. Recently diagnosed with MS though I may have had it all the time too. Marshmallow root and uribel really helps me when it's bad as well as avoiding orange juice and spinach.
I dont have an ms diagnosis yet but I feel so sure and the fact you just said this makes me feel even more sure. I was diagnosed with interstitial cystitis at 26, im 41 now. Carpal tunnel, drop foot, meralgia paresthetica ... all separate. I wish someone would help me connect the dots.
Sir I can't thank you enough for all the information you have given freely. I was difficult to diagnose because I have rings around the lesions on my brain. the doctor's assumed I had toxo plasmosis, cancer, or maybe a tape worm. I apologize for the spelling. It took them 14 days to get a proper diagnosis. I just started trying to learn about my condition. I was diagnosed almost exactly 13 years ago. I never had the courage to learn about the possible symptoms. I have suffered many of the symptoms you describe in these amazing videos. Now I can talk to my neurologist about them. Bless you sir. You have helped me to understand so much about my own physical and mental behavior. This is a very confusing thing to deal with. Your videos have given me hope. Something I lost a long time ago. I have no idea how to express my gratitude Doctor Boster. Thank you so very much. Love and respect from Texas.
Ooh m.s. itching when will it stop! ~My favorite comment from most m.s. doctors is ”sorry that's not typical of m.s. and further more is not an multiple scerlosis symptom" Dr Erin b. I can truely say you are my favorite Dr to date. Thank you so much for taking the time to make this channel. I'm hopeful my insurance will start covering transportation again so I could see u again I clinic.god willing.
* Sincerely Cyn.
Hang in there Cyn!!
I get the itching - the worst (along with nausea) - but I did find something that helps for me …… Clove Essential Oil in a cream or oil or lotion. It’s a topical analgesic and, when absorbed into the skin will numb things for several hours. It’s a break. But don’t use tons of clove - maybe a tablespoon tops (15ml) to a 1/2 cup or more (125ml) of cream/lotion/oil ….. I will often add a few drops of Tea Tree Oil in case I break my skin itching so I can possibly prevent an infection …. just an idea. Nothing else works for me. If it’s REALLY bad I’ll take some Gabapentin too.
i have several of these, the uncontrollable crying and laughing is a nightmare, my doctor just prescribed depression pills, I knew I wasn't depressed so didn't take the pills
I have had unusual symptoms. The left side of my head and face going numb. The itching especially at night, it is annoying. Buzzing in my ears. An annoying cough that often leads to hoarse voice. Trouble swallowing. The heat sensation like in the back of my neck. Cog fog for quite some time.... it would be nice to find a new neuro in FL that will help and not think I am crazy. The challenges of relocating and having to find new doctors.
elizabeth vazquez omg, the itching at nightttt!! I have had that for a whole year n only now coz of intense joint n bone pain in my entire body is my neurologist testing me for MS. N I asked 3 docs including my neurologist abt the ringing n buzzing in my ear! My eye has been twitching for 4 weeks straight now n I feel bugs r crawling on me all the time. Tremors n fluttering in muscles! I m still not diagnosed tho. Brain mri next Wednesday
I've experienced some of the unusual symptoms mentioned in your video. I'm concerned that I have MS but have not been tested. I was diagnosed with Hashimoto's during the pandemic. I kept telling my doctor that something was off but he never considered an autoimmune condition since my labs were normal. I finally figured it out and went to a different clinic to get tested for antibodies and was properly diagnosed. My story is too lengthy to post but I'm struggling in life like never before. It's my belief that most people don't understand autoimmune disease as a result I've suffered greatly. I'm not a typical complainer, I just honestly have never felt worse. I need to have a MRI, I just don't want another doctor who doesn't understand. If you have any suggestions for a doctor or clinic in the Nashville, TN area please let me know. Thank you so much, Jamie S.
Hi Jamie. Sad to read your story. It took me THREE Neurologists and nearly two years to finally be diagnosed with MS. Even misdiagnosed me with Lymes, another said it was Lupus! Yet another said I was shopping for a diagnosis(after seeing my past record of other Neuros), and was needing a psychiatrist because he said I was a hypochondriac!! I suffered for years, but kept looking for an explanation. KEEP LOOKING for a neurologist that will do the proper testing-MRI, spinal tap, EEG....my thoughts are with you.
Wonderful and informative video. Thank you. I have an unusual symptom of an exaggerated startle reflex or Myoclonus affecting mostly my left side. It is embarrassing at times. For example, Thunder, my body can literally fly up, or I nearly fall over. Watching some films, my left arm will startle over every loud sound or even visual trauma causes it. Some folks have thought they had scared me. This isn’t easy to explain to them. My neurologist has me on Neurontin. Also, before MS I was brilliant at multitasking, now I have trouble writing and listening, or cooking and someone talking, etc. All frustrating. I have gaps in talking. Etc. I have had the Fog attack you explained, recently, after having a long bout of Covid and pneumonia. I became so tired and disconnected I ran a red light and nearly did it again. It was as if, I could not connect the light and stopping. This was just a couple of weeks ago. Terrified both myself and husband. I wish you were my neurologist. Thank you so much.
Thank you for clearing up so much of what iv have been going through
My unusual symptom is smell. It started last spring. I swore my bedroom had some type of gas leak because all I could smell is this strong nail polish remover smell. It was so overpowering that it was burning my nose.
Little to say, I slept in the living room with all the windows open.
My husband flew home the next day and told me he didn’t smell anything. Okay I thought, maybe I’m going nutty.
A few days later as I’m removing dishes from the dishwasher, I swore they all smelled like sulfur. So I redid all of them. Still, they came out the same. My husband did not smell anything.
Then I saw this trend of all water smelling like sulfur. Not only our house, but my parents, and other places.
I’m in between finding a good ms specialist now. But the last one and the pa prior told me that it couldn’t be a symptom. I’ve had ms since I was 14 years old. I can almost guarantee it’s my ms.
Funny thing is, my first big attack to get Drs attention at 14 was consistently vomiting. Couldn’t figure it out until an MRI was done.
I also have the crying attacks. First started at a Monster Truck Show with my two kids, husband, and in laws. 😂😂 imagine all the looks I got crying hysterically while monster trucks and smashing cars. My husband was so confused. I’m like I swear I’m happy.
That's me, i smell fire, so i have to check the whole house.
I smell smoke.
I get a warning sensation on different places on my legs. I also get a sensation of water droplets as well on my legs but no actual water on my legs.
I get the drops ofs water hit my legs but they're really not there
I also get a sensation of water dripping on me. I used to get a burning sensation on my ribs like being touched by a lit match. The latter is gone.
Oh my I have had that water droplets running down my legs. Only to find out there was no water on my legs. Weird. Thought I was hallucinating.
I was just Diagnosed 2 weeks ago with RRMS and the weirdest things I had happen to me was that the whole right side of my body felt numb, only to sensations like temperature and touch. Also I had double vision vertically. made it very hard to focus on top of feeling like garbage. Thanks for this video :)
Thank you for sharing with us Antwon. Talking about your own experiences helps normalize this condition and I really appreciate that! #WeHaveMS
Antwon Vinnie Those were my first two symptoms. The numbness was in one side of my face and arm first. So numb my face looked like I had a stroke.
my first symptom seems to be numbness across my whole body (head then spread to shoulders then everywhere) and a loss of taste and smell sensations. No MRI yet but my grandmother had MS so likely I have it with these symptoms
Go find out.don't talk yourself into believing it unless you really do.
Did you have any lesions on your mri? Or dx from symptoms only?
I take neurontin, and it causes my heart to pound, along with extreme anxiety. Also causes me to have insomnia.
I am so thankful for your videos. Even as I type this I keep turning my arms over to see if an ant is climbing on me.
I have other symptoms but I'm searching for one of your videos about pain.
Thank you so much 🙂
Ok 30 year veteran of M.S. here ... odd symptoms are my specialty . The day before yesterday I was sneezing throughout the day but the sensation to sneeze was only on one side of my nose .
I think the older we get having MS the more we understand. I really am thankful Dr.Boster puts many things in perspective. Me too--the rare symptoms. I honestly I could get or take something to help with choking. Had to shout out and leave you a message to another Vet of MS
Nauseous as if some just poured a bucket of nausea on my head, goosebumps down the arms and legs. Passing in a few minutes but repetitive. Almost the same but a few times it has been FEAR. All caps because it’s that powerful of a feeling. Laying down thinking my dog was going to chew my face off, or standing paralyzed in a open field thinking something it going to get me.
Luckily rational thought prevailed and got me out of the field. Neither seem as often anymore, but still happen.
I had uncontrollable hiccups since i was 19, before i was diagnosed with MS, i used to hiccup at least once every hour, it was embarrassing and I didn’t link it to my MS until a few years later, i went to a doctor and they just gave me meds for stomach acid (gaviscon) but it didn’t go away, at age 24 i was diagnosed with MS, and as soon as I started fingolimod and took steroids to control my first ever attack, I noticed that my hiccups disappeared. Nadine from Jordan - 26 years old
I've experienced uncontrollable retching. Thanks for making me feel less alone in my ilness
Dr. Boster, I’ve had MS x 40 yrs with the usual course. I’m now secondary MS . In the last two yrs I’ve developed sleep apnea. Before the dx it was horrible. Now on cpap and things are better. Also over the last year I developed left vocal cord paralysis and don’t have much of a voice at all. I am unabl to have an MRI as I also have had OHS for mitral valve replacement and an ICD. This is only a portion of my hx. Love listening to u talk about MS.
I would laugh in my sleep sometime and don't know why
I was diagnosed a little over 30 years ago. I went through a period of several years where I would occasionally smell cigarette smoke. There were no smokers in the house and I was the only one who could smell it. Lately the lower back of my scalp will itch for a couple days or so. My scalp is healthy and it comes on quickly and goes away quickly--never would have guessed it my be the MS causing it or that the smell of cigarette smoke could be from MS either. Thanks for your videos.
TY for sharing Tari! #WeHaveMS
This has been extremely helpful as I was diagnosed with SLE (lupus) and a multitude of other signs and symptoms!
Thank You for sharing Dr. Boster!!! I hope NOT to have some of the rare conditions that you described but it is Very Helpful knowing this information! And sharing it with my wife!!! You are AWESOME Sir!!!
I'm relieved to seethe conclusion of itching! Fortunately my symptoms are not on the level as the patient mentioned, but I have had to wrap my legs at night on more than a few occasions because I wake up with bloody shins from scratching at night.
I've had MS for 20 years, but in the last 3 years I've developed Neuromuscular Scoliois and it has progressed rapidly and is, by far, the most debilitating symptom I've experienced.. When I first noticed it I was leaning slightly but no pain. Over the next 2 years my angle of scoliosis has progressed from 40 degrees, to 55 the next year, and now it is 68 degrees (at least that's what is was in January.) I cannot stand up straight and that's an understatement...I lean at an almost 90 degree angle when I am on my feet for any length of time.. I spend most of my time in a chair with feet elevated, or in my bed, arranged with a wedge system so I can be upright in the bed I have never been a good candidate for surgery because of the extensive spread of the scoliosis and my inability to rehab from a surgery this complex. I have no core strength after 20 years, the core strength is very weak Far from what is needed to recover from a surgery that takes two days to complete...one 8 hour surgery and a couple days later a 12 hour surgery. During recovery you need to move your body without bending your back, and rehab can be 6 months (the incision is from the cervical spine through L-5.) I still can walk, just not very comfortably. I've had my Baclofen pump upped and it does keep the spasticty in check, but does nothing to help the lean/curve. The thing that surprised me about the scoliosis was the speed at which it worsened. The radiologist had an x-ray that we took just a few years before the beginning of the scoliosis and my lumbar spine was perfectly straight and the vertebrae were spaced perfectly. Now I advise if you notice a lean to one side, get an scoliosis series of x-rays and rule out neuromuscular scoliosis. Scoliosis usually progresses a degree or two per year, but with Neuromuscular Scoliosis the disease can progress much more quickly. Mine has progressed a degree per month and sometimes more that a degree per month. So pay attention to "leans."
Wow... This is me! I've been reading about this since I came across your comment earlier this evening. Thank you for sharing! I would love to have an update if you are willing! 💕
Love the tie!
Thank you Ann! What a nice thing to say!
yes! i had intractable vomiting for 6 weeks before I was diagnosed. Thought it was never going to stop. Great for weight loss though haha.
Ha!
What a great man and doctor ❤
I experienced the itching during my first and second attack. On the shoulder blades and on my chest. It lasted about 2-3 weeks. As a consequence I scratched and injured my skin. I found alleviation trough voltaren cream. Fortunately it stopped after a few weeks.
Thank you so much for your work doc.
A vibrating jittering trembling feeling that goes from my chest down through my abdomen, groin and to the tops of the front of my thighs. I always wake up with it and now that it is 3 a.m. it is back. It's like an earthquake under my skin. It's horrible. Right now it's been happening for an hour. I used to think it was atrial fibrillation, a racing heart but that was ruled out.
I also can't walk due to getting totally out of breath after a few steps and have to sit down. That happened suddenly one night. I was bedridden for months and now can walk about ten steps but it takes all my strength to do it. It takes me 15 minutes to catch my breath.
The weirdest symptom I have had was when feeling started coming back into my feet, I would get what I jokingly called "phantom-puddle-syndrome"; when my feet would register cold floors as wetness. I would constantly have to reach down and touch the bottom of my feet to see if it was wet and it was dry. I live with cats so I always had to check. Luckily that one's gone and now I have foot cramps on a daily basis (escpecially when I go to sleep, annoying) which cannameds are really knocking out now. I just did the full list and it's pretty impressive: days of essential tremor, "the zap" up the spine, speech and swallowing problems, lung spasm, Bell's palsy, paraesthesia on left side, burning right thigh, eyes not matching, bladder and bowel problems, tearing for no reason, tearing in one eye only (super weird), depression, burning and cramps in feet and calves, compulsive scratching, depression and cog fog, couldn't turn my head to the left, cerebellar tremor in hands when doing actions, and my weirdest was dizzy with my eyes closed. Mind you, I have luckily never had ALL of these at the same time but have had some combination of these over the years (since 2007).
#WeHaveMS
I get this as well. A feeling of wetness around my left foot, as if I'm standing in a bucket of cold water. I can literally feel the cold water but my foot isn't even wet. For a while I tried to pretend it was a spa treatment in an effort to change my brain's narrative about it being painful but that was not successful. More gabapentin seems to be the only thing that helps.
I have MS. One day I was suddenly hit with a severe form of OCD. Literally one moment I was fine and the next I wasn’t. I thought I was losing my mind until I got an MRI showing an active MS attack. The symptoms improved greatly with IV steroids., although unfortunately not enough and it’s still a struggle for me. OCD is brutal 😓
Just diagnosed with MS. Ima 25 year old man. Very scared but this helped me
Hang in their buddy, I’m going to get tested in a couple of days. I’m worried but I know the Lord Jesus Christ has my back. Trust in the Lord for everything
Yes sir, my humor has been gone for years, I would say that it has been more than a decade. I was diagnosed in 04/2022, starred Rebif in May. I was completely shocked, and what a relief it was, when in June I was watching a new sitcom and I felt my humor rise from deep within, much like a balloon filling, and then it burst from me. I was so relieved, I just couldn't believe it and I really don't know how to explain to you about this, I cried due to the relief.
Ah yes itching , insane itching ! I have to keep my skin covered or my skin just lites up .
When I was first diagnosis, my hearing dropped down to 20% in both ears. I do have hearing loss but that was extreme. When people talked to me, it sounded like the teacher from the Peanuts cartoon. Thankfully I regained my previous level of hearing after a round of steroid infusions. Also I have and randomly still experience that horrible itching you referred to as well as the cog fog. There were times that I had no idea what I did throughout my day and it scared me. Also I have trouble walking sometimes, but it's weird because I can drive a car fine but not walk. I literally have to keep saying left, right, left, right in my head or I can't walk at all. Even when I would do that, my walking was very slow, difficult, and robotic. Those are some of my experiences that my neurologists thought were unusual.
Great video! I'm 64 and I take Copaxone. I wasn't diagnosed until I was 57, so I was always confused about my clumsiness and my sanity. I had visions that came true when I was 16. I heard a voice since I was 9. I cried all the time and was bed ridden for 4 months when I was 18. I'm doing really well now, but I do have a lot of lesions. Sometimes I have a tooth ache real bad, but I don't even have any teeth. Maybe it's a nerve pain, but it stops when I use Ambesol. My eyes twitch and I jerk right before I fall asleep. There are times when it feels like thread is rapped around my toes and I spend time trying to get it off. Then I finally remember it must be an illusion from the MS. IDK. My neurologist is very brief and says very little when I ask questions. It feels like he's on a time schedule and rushes through the visits.
#MSWarrior
Mary's World I thought I had hairs wrapped around my toes for all of last summer lol
Thank you so much for discussing “Status Epilepticus.” This exact type of seizure affected me Christmas Eve 2017. Three days before it occured, excruciating pain gripped my quadriceps. By day three, my then-husband, noticed I was holding-the bedside while my right leg continuously stomped the floor. He called 911. What was scary for me, was seeing “snapshots” of events then blacking-out. I literally thought I was in a nightmare. According to my ex, my eyes were open the entire time, but when I tried to speak, nothing intelligiblele was spoken. “The lights were on, but no one was home.” The hospital/ER doctors were clueless about MS. Brute strength must be a trait of this type of seizure, as it took four male nurses to hold my legs for a catheter….I don’t remember. All I know, is I woke-up in ICU 24 hours later wondering what had happened. Later on, I learned it took seven IV doses of Ativan to stop my seizure. It’s the most terrifying MS experience, ever. What the brain decides to do when attacked is bizarre. Thankk you, again. Great, informative video!
My daughter has been diagnosed with MS during Covid. Earlier this year she underwent treatment with Lemtrada. Her 1st one. She is 45 years old now. I am watching your videos regularly, and I can recall when she worked in London many years ago, and I visited her, she did not feel well, tired, and really had a problem skin. We went to a nearby Chinese doctor practicing in alternative medication, she immediately said, "my daughter has too much body Heat" at the time she was 21 years old. Is that a possible symptom of MS ? Your videos really help all of us to learn more about this disease, and how to live with it. Much Appreciated
I just figured out why I cry when I express some feelings that doesn’t warrant crying...I will even say, “Why am I crying? I’m not even sad!”