MY MS DIAGNOSIS (PT 1) l MY MS STORY l Multiple Sclerosis
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- Опубліковано 5 лис 2017
- I originally made this video for my friends and family, and posted it on Facebook. It has been viewed almost 3k times, and several people requested that I put it on UA-cam. I finally decided to go ahead and upload it. (There is a quick Pt.2 video that ties up certain topics I missed). When I was first experiencing symptoms I knew MS was on the list of possible diagnosis, I too turned to these kind of videos to gain some understanding of the diagnosis process, other patients symptoms etc. I am NOT a physician (obviously). I describe the disease, and the process I went through to get diagnosed through my own lens. This is information I learned along the way, have read up on, or was told directly from my own physicians.
I do want to elaborate on the part of the video where I state some of the drug therapies are fatal. The way I worded it in the video makes them sound super risky, and that is not always the case. It is about choosing the right therapy for your body. For example, if you have cardiac issues one of the oral medications could be fatal for you. If you have prior liver disease or damage, the drug I am on may be fatal to you. If you are positive for the JC virus some infusion therapies may be risker and possibly fatal to you. The last thing I want to do is sound dramatic, so I apologize for that wording. By and large, the drugs are NOT fatal...albeit, hard on the body in general.
Moreover, many MS patient choose to go the natural route. There are several protocols out there now (Swank, Whals), that promote a particular MS diet, stress reduction, and rest. I believe in these as well. Again, it is up to each individual to choose for themselves how they want to manage their disease.
Lastly, it seems Lumbar Punctures are sort of a hot topic in MS support groups; whether or not they are necessary for a diagnosis. You can get an MS diagnosis with 0 O-Bands found in your CSF. However, 95% of patients with MS will show positive for O-Bands in their CSF. So, for me the test was worth a shot. Remember, there is no 1 conclusive test for MS, that includes the Lumbar Puncture.
I was diagnosed with lupus about 8 years ago. The rheumatologist & neurologist ruled out MS. Fast forward & I am 99% positive they made a mistake & it is MS. I have all the symptoms. I’m so tired of doctors. They never listen..I’m seriously too tired to start all over again. The fatigue is unbearable
Sue-I am so sorry. Mimickers of MS and misdiagnoses fascinate me. Lupus was for sure one of the differential diagnoses I went through. I notice this comment is older, my apologies. How are you doing now?
Is it possible you have both ? I mean with lupus you have some specific positive blood tests that points to lupus , I have lupus too and sometimes I think I have MS too but I haven’t consulted a doctor about it yet . I always forget to tell my rheumatologist that I stutter sometimes and some other ms symptoms
ask for an MRI of your head - if there are multiple lesions, it is an almost an automatic diagnosis
My daughter was misdiagnosed with lymphoma in 2017
She never recovered n i didnt believe it
So i took her to a rheumatologist n she diagnosed her with lupus
Proper meds n 3 days she felt much more better
I have also been diagnosed with ms recently after a misdiagnosis
But too late , many more symptoms that wont be alleviated😭😭😭
I am going through this too! I have a rheumatologist and he thought I had lupus and I had three different types of ANA that were positive. I also was dx with Hemiplegic migraines but before that was dx they thought I had MS. I had a brain MRI and a cervical spine MRI and There was a differential dx of MS. But two other neuro docs said it was migraine lesions. Since 2018 I have seen three different neurologists. It’s a nightmare. I am coming back around to thinking MS because I have had incredible numbness in my hands, forearms and left leg. I am going in to get an EMG in a few days and another MRI.
I have multiple sclerosis and I stutter so bad, sort them memory, I am happy that you don't have a hard time speaking! Bless and pray to all for this disease!!🙏😣
I had a recent MRI after a week-long bout of slurring and spasmodic speech. It showed three lesions on my brain. I am being tested for MS. Was speech one of your earlier symptoms? I haven't found too many people who had that in the beginning.
Great video. I’m in the process of testing for MS. So many symptoms and it’s quite frustrating. But seeing and hearing your positivity is encouraging. I wish you good health always 😊
Emma's Sweets I am sorry to hear you are going through this, but the quicker you can get some answers the better. Wishing you well. Thank you for your kind comment.
Thank you for your honest talk about your MS diagnosis. I have been having tests for over a year. Not yet diagnosed, appointment in a few weeks. Everyone I listen to is different. I am over 70 if I have it, I’ve had it awhile. Symptoms started years ago. Thank you for sharing your story.
There is some great information in here; thank you for taking the time to make and post the video
That was kind of you, thank you for watching.
You are adorable! And not boring lol...you were really thorough and I enjoyed your videos. I am newly diagnosed with RRMS, Sept 12, 2017. I wish you and your family the best!!!! Prayers to you!!!
torn8dogrl 15 You are too kind, thank you! ❤️ Thank you for watching, and stay tuned. I plan to post some more videos for MS Awareness month (March).
Thank you so much for doing this video and props to you for having the courage to do it
😉I always know when someone watched it all the way through! Thank you for the kind words!
Thank you, Cassie. I am just beginning my journey to diagnosis. I’ve had so many unrelated symptoms that bundled together sounds very much like your story. I watched the whole video, not long at all, and just kept nodding my head. Thank you for sharing your courage and information!
Riconda Lamb Thank you so much for your kind words of support! I am sorry to hear you are going through this. Please know you are not alone.
Same!
Thank you, your video was not too long it was very informative.
Thank you, your video was not too long it was very informative.
This is a wonderful personally narrated video. I have watched a few recently on MS, and yours is the absolute best. In fact, so much so I am un following everyone else! Thank you and I look forward to your future videos.
God bless you, Jayne 😊
Jayne, this was such a lovely comment to brighten my evening. I need to make some new videos with updates for sure. I have since started working full-time, so this little corner of my world took a backseat. I appreciate your support! Mind if I ask how you are impacted by MS?
@@cassieski8005 Absolutely. I have not been diagnosed..yet! But I have had so many symptoms similar in fact I do have Lupus. In the last couple of months a number of things have been happening. Problems with my left eye, Dysphagia, numbness and tingling in my arms and legs, incontinence and a weird feeling on my leg like stepping in water or splashing water on my legs. I have been having physical therapy on my right shoulder as I can't properly lift my arm without sharp pain, and now suddenly the other shoulder is the same, and my legs feel like lead. I am seeing a Doctor tomorrow. I must admit I'm really scared of having a Spinal tap. I could go on but it would take forever. One thing I didn't know which you mentioned was the heat factor. I've complained to my doctor for years about how if I take a warm shower I get overheated.. forget taking baths! My Doctor said it was symptomatic of Menopause in my forties!
Take care from Jayne in Wisconsin 🤗
One of the best videos I have ever watched on MS DIAGNOSIS
Very kind, thank you!
Thank you for sharing your story ❤ much love to you and your family ...
Hi Cassie,
Thank you so much for making this video.
I am a 52 year-old male and I'm in the process of being tested for what could be MS.
My symptoms started in 2012 I think with optic neuritis.
Your video was very good and very helpful, I could see a lot of true emotion from behind your smiley face.
Thank you from the bottom of my heart for sharing your experience and diagnosis.
Peter Clews thank you so much for your heartfelt comment. I appreciate the feedback, and am happy to hear from my fellow MS warriors. How is your diagnosis process coming along? Hope you are well.
Hey, do you get any diagnosis?
Thank you for sharing your story. I hope you are doing well.
Beautifully clear and concise description of this disease.
Christine Cortese you are kind, thank you!
I was diagnosed about 16 yrs ago and I was feeling the same symptoms as you to start...I can relate! Thanks for sharing, take care of yourself!
Thank you, you take care too!
@@cassieski8005How are you doing lady ?
Thank you for your video. It has answered many of my questions and my crazy symptoms
Christina Briggs I am so glad it helped in some small way. Wishing you well!
Thanks for this video, very informative!
Meghan Cheshire You’re welcome. I appreciate your feedback and support. ❤️
People that have no compassion need to find another line of work. That was so unacceptable. I am so sorry. As if you aren't terrified enough. You had 2 very scary possible outcomes. I hope that tech was reprimanded. That is not acceptable standards of patient care. Thank you for being brave enough to tell your story. I needed to hear your bravery. I am in the same boat. I am terrified of new neurologists they are dry, no bedside manner, and treat me like I don't live this everyday. Bless you & thank you!! ❤💜 much love 🤟!!
I’m only a couple of minutes in and this is by far the best and clearest explanation of what MS is. Thank you 😊
Very kind feedback; thank you!
I am now 64 and I have through the years (many) suffered… I have had bloodwork done through the years…I asked to be tested for Lyme and West Nile but they refused…(until recently I did test for West Nile)…. Talking about so many symptoms and bizarre symptoms as well… I am now down to thinking MS… most everything you’ve said… I have been through and still going through… to the point of pure collapse….so I now know that an MRI is needed…I am glad I came across this video… thanks.. I don’t feel like I’m losing my mind…
Thank you for sharing your experience. Incredible. The ordeals you've experience I currently am going thru. Will be going thru the process very soon.
Keep me posted!
Thank you Cassie... I have been dealing with some symptoms for the past 6 months. I have been to 7 doctors appointments. Numreous blood tests And a MRI on my legs. Lots of other things have been ruled out but I still don't have a diagnosis.... So now I have an appointment with a neurologist on Nov 25th and the waiting is very hard... I want to say that you are very easy to watch, follow along and understand. Your video answered so many of my questions that have been weighing on my mind..... Looking forward to watching your other videos....Again.... Thank you so much..
Wayne, I am sorry to hear of your illness! The waiting was hard for me also! 5 years from going to my primary dr with all my Symptoms! 5 or 6 different neuro inflammation illnesses! In my 5 years I had a Stroke, a Heart Attack
because of the Stress of Not knowing what was going on with my body!
Mis- diagnosised for the last 25 years! My Neuro is a Dr from India and is very Good!
My first Nuero was a White Male that called it brain Fever!
I hope you have minor problems only! Tell your Dr to MRI your neck and Back for problems in your spine!
I found out I had 8 herniated disks that cause alot of Nuero problems with MS!
research, research, research your options on The Internet! GOOD LUCK!
Wayne-Thank you so much for your very thoughtful and kind comment. That means a lot to me. How are you doing? How did your neurology visit go?
Thank you so much for your story it really helps to get an understanding of MS
You’re welcome David; thank you for watching!
Enjoyed hearing your story. Not boring at all. You’re easy on the eyes, haha, and I appreciate someone who has the guts to tell their story.
🤣That is really very kind. Thank you!
Hi Cassie, Your video was the best! I have not been diagnosed yet, but I know in My heart that I have Ms! I have lesions on my MRI, I have been experiencing all of these symptoms! I just can't get them to confirme ! I'm so upset & my life is very stressful, I have had many other health problems since the age of 7, but this has been going on for at least 4 years! You were describing Me with your symptoms! I just want to start treating it, because it is getting debilitating for me! Thank You for the video's! I'm so depressed over not getting a Doctorate to wake up & help me! Love to You & your Family!
Thank you! I hope you are doing well. Any updates?
Thank you!! You are so great to tell us. I think I might have MS.
Teresa Leach I hope not. Have you sought care?
Thank you so much for sharing your story. I’m going through the process now of trying to rule out MS. So far everything keeps pointing to that. Time and more testing will tell.
Amy H thinking of you. Hope you are well.
Hey, did you have a diagnosis?
You are so brave and sweet taking about your experience with MS. My wife is just diagnosed after she got sick with Covid. She goes through a rough time, but staying strong on this journey. Thank you very much!!
Thank you for your kind words! 💗
@@cassieski8005 The doctor gave her the list of medications to choose from, but honestly, it's so overwhelming to choose the right drug. Any advise?
@@markcoulter8935 my advice just as a fellow patient of MS is to go on the most highly effective treatment that she is comfortable with (in regards to safety profile). Most of all I recommend she watch all of Aaron Boster’s videos here on UA-cam. He has the best information about the therapies available on the market. He is actually my neurologist now! (I really need to make an updated video). Wishing you and her well!
Mark, Do you mind sharing your wife's experience? Are you saying she got diagnosed with MS after her covid? I am going thru some of the symptoms like numbness&tingling on both of my hands,feet and around my face mainly on my lips. I had covid in July of of this year. The doctors all diagnosed it as post covid symptoms. I know lots of people are having similar symptoms like MS post covid.Pray that your wife gets better. Hope to hear from you.
@@r-jproductions1343 She went to a holistic doctor and he said that she got viral loaded. He told her follow the long covid protocol : ivermectin, Zink, vit D3, and C. It's been a year since she had covid. She took ivermectin for 2 weeks, and has her vitamins every day. Her neurologist said that it might be a bad case of covid or the beginning of MS, but he really doesn't know. At list he was honest. She doesn't take any drugs, no dairy, and sugar. Walks a lot, goes to gym, meditates, breathing exercises. She is trying to stay away from stress, but it was extremely hard with the war in Ukraine. Her dad got kept there for 2 months with no food, and medication. She is doing ok now. Thank you for your kind words, dear. Her name is Natasha Coulter.
Thank you so much for this video. I watched it all and found you to be very inspiring. I hope you're keeping well.
I am at the very start of a diagnosis as I've been having a lot of internal tremors when I relax and occasional pins and needles and also foggy brain. My head and neck mri is booked for the 23rd December so I'll be taking it from there. Thanks again and take care
Thinking about you Brick; how did your MRI go? Thank you for your kind comments!
I have raised four children with MS an being homeless off an on from the age of 15 until I was 40 my children are older and trying to make it in this thing call life.
Thanks for sharing, you are not alone.
rob moris thank you! You as well.
You are amazing 🤩. Great video and really really helpful x
Very kind, thank you for watching🤍
I don't have MS but I find you easy to listen to... Very clear.
Ed Janston why thank you. 😊
Very informative. Well told story. Well done Hun 👍🏼 XXX
proskill Thank you; I really appreciate you taking the time to leave a supportive comment. ❤️
Best explanation ever. Thanks 🙏 ❤
That is very kind, thank you🤍
I've had a lot of numbness from my toes to my knees, sometimes on my scalp and arms and face...not able to recognize words and the fatigue is overwhelming
I am so sorry. That is overwhelming.
This is actually really helpful. I'm in the process of being diagnosed right now and they are pretty sure I have MS
I am glad this is helpful!
Thank you for sharing! I feel very similar to your story (super claustrophobic) except long story short I did have brain lessions but also a large tumor. Underwent major brain surgery last July and removed all of it. Scans every 6 months for 2 years. Then 1 per year however, also have to do cervical, thoracic and lunbar scans. So MRI machine and are forced friends so to speak. I am waiting for lumbar puncture at year mark after surgery and hope I can get some answers. I have stenosis, DDD and bone spurs that make lying flat excruciating not to mention the claustrophobia. So sorry you had bad hospital staff as it makes a difference. Can't wait to see your next video and praying for you! 😊
You shed some light on the MS. You are correct about Neuologists..
payitforward2prosper thank you for your comment and support.
Thank you for sharing your journey ❤ My husband has all the symptoms of MS. Seeing doc on Friday.
I hope your husband is okay, and thank you for watching🤍
Good positive video that gives people hope who suffers with MS!!
Thank you Donell; mindset helps. I really believe that!
Thank you for sharing Cassie, your courage and positivity is palpable. You describe your story and MS diagnosis /symptoms extremely well. You are a natural in front of the camera! I was diagnosed in April this year. Hugs x
You are too kind, thank you. I hope you are doing well! ❤️
Glad I found this. Have had symptoms for yrs but ofc other things were ruled out for the last 2 yrs. Nuerosurgeon finally said surgery isn't gonna fix you, I think you have MS, he wrote up a STAT referral to a neurologist and said I'll hear from them within the week for brain scans and spinal tap.
Thinking about you. It is a lot to go through for that period of time!
I am having an MRI this Friday, I went last week but I couldn’t do it, Friday they are going to give me a relaxer, I have the same symptoms- the intense numbness and tingling it driving me nuts, I have done nothing but watch videos like yours, not sure if Its in my head! I have had all the blood tests and they were all clear. Thank you for taking the time to make this for others to know they are not going through it alone
Clare Reay you are not alone! How are you doing? How did your MRI go? Thinking about you Clare.
Cassie Ski I eventually went through with it without the relaxer! Worst experience ever! The MRI was clear. The neurologist doesn’t think I have MS.
@@evie2001 have you been checked for diabetes?
What was it friend
@@bonita2311 ended up being stress
Thank you for this video. There is no need to apologize for anything. I appreciate you taking the time to give all of the details. A family member of mine is currently in the hospital. MRI results came back with lesions on the spine. Spinal tap is tomorrow. Thanks again for sharing your experience.
I am so sorry, and I hope they are doing much better🤍
Tank you for breaking down the ms ty really good explanation really good I just want to say thank you a lot........
Thank you!
Thank you for this.
S Weber You’re welcome, and thank you!
Thank you for sharing your story!! It takes a lot of courage. I have a question-after watching your video, I notice you clear your throat a lot/try to get rid of a cough that seemingly isn't there. Do you deal with that a lot? I do, and occasionally have issues with swallowing as well and was just curious about it with you.
dodidoodles I am sorry you are having issues with swallowing. I mentioned that as a symptom in another video (forgot to include it in this one). Since being on my DMT for over 18months and being far enough out of that relapse , I no longer struggle with dysphagia. It may reappear-time will tell. As far as throat clearing, probably just my allergies. 😊
Thanks for the props 😂❤ and for bravely sharing your story! You are adorable! My mother had MS. It’s so important what you shared that mom’s need to tune into their bodies and needs instead of putting themselves on the back burner. We honestly needs billboards that say “A Ladies Night Out is not self care”
Ha! I always know when someone has watched the whole thing from the props comment😆🤍 and I can not agree more - A ladies night out is no self care! I am still not perfect at this, and have to be VERY intentional about out it. Thank you for watching 🤍
My vitamin D3 levels have been VERY low for such a long time as well as family history of low vitamin D3.
I was on my doctor every single time I saw her for my back issues.
I was diagnosed with MS 1 week ago along with having back surgery.
I am with a walker and my primary care physician is 25 miles away and sitting in the car is terrible but I am going to see primary care doctor tomorrow at 11am .
I was diagnosed at another hospital and health care system.
Admitted to the hospital for 6 days had emergency surgery on my back and diagnosed with MS.
I'm seeing so many people with low vitamin D3.
I also knew something was wrong with me and was pushed off so many times regarding my symptoms.
Not angry(OK a little bit)
Finally have an answer .
MaryLynn chronic low vit D levels particularly prepubescent hVe been shown to be an indicator/trigger. In fact a low vit D correlation is one of the only things you can get most researchers and physicians to agree on. There definitely appears to be a link.
Praying God for you, let miracles happen in your life. Get well soon and lead a normal life!
So far I have been doing very well; I appreciate the prayers.
All my prayrs to you and you are my best friends mom and since i was over alot i will know you will get threw this and nothing can bring you down.
Oh Kayla; you are such a sweetie! Thanks love...we MISS you!
I haven’t seen a neurologist yet but my MRI showed several brain lesions and I’ve experienced several MS symptoms. Epstein-Barr Virus (mono) has a strong link to MS. My blood work showed I’ve had mono before and I started on antivirals which have helped significantly.
I’ve also been on a detox diet for two weeks and I’m feeling almost back to normal. There tends to be significant inflammation with MS which is exactly what my bloodwork showed.
Don’t underestimate the power of food! There are so many amazing foods that help detox the body and reduce inflammation and there are benefits from intermittent fasting. I also drink at least 100 ounces of water a day.
My first symptoms started in December 2019 and by March 2020, I had a pretty clear idea that my symptoms are related to MS. Don’t be afraid to push for what you need. I knew something was not right and refused to let it go until someone could tell me what was going on. Good luck to everyone who is on this journey!
The Epstein Barr Virus is one environmental trigger theory. Yes, nearly every person with MS has had EBV; however if you tested the entire adult population 88% would show antibodies, so the generality of the virus diluted the theory. I hope you got some answers and are felling well!
Exercise regularly if you can, walking and swimming to keep your muscles strong! take multi vitamins every day, eat tuna, salmon or other seafood! Fish oils are rich for nerve protection!
Be prepared for your insurance to deny a lot of your testing costs! MS is a lifetime chronic illness that will get worse! The steriods they prescribe will only be temporary fixes, like chemo is for cancer! Not a sure thing! prepare your family for help in the future, because mobility and brain fog will get worse the longer you have it! Every year get your dr to make new tests and keep track of all your symptoms in a daily journal! When you know you no longer can work, take all of those dr tests and reports to Social Security and start your Disablity process, and do not allow them to dismiss your case, because you will be disabled by the time they approve you!
I hope this information helps you in your journey, mine has been a 25 years and counting! GOOD LUCK AND STAY SAFE FROM COVID!
You are adorable. Thank you for this video. I have MS too, and have been in a three month exacerbation. I am coming out of it but it is the worst I have had and I have been very discouraged. Yes. MS does not have me! I will watch part two tomorrow.
Hi there.
Had a three month round of symptoms maybe a bit more before I finally went to the ER with my back pain, severe depression and urinary incontinence and headache behind my eyes.
Thank you. I am sorry you are in such long relapse. Thinking about you.
This was very informative... thank you
KM I really appreciate the feedback; thank you!
Thanks for this video! Very informative I watched it all . I have the same symptoms with numbness and tingling, I’ve had spinal tap the say it was normal 🤷♀️ I also have horrible headaches as well they’re thinking I have NPH so going for more tests . And being a mom of 6 can be pretty rough with all these symptoms, how do you do it?
kayla Lenz I am so sorry. Trust the process of differential diagnosis, surround yourself with physicians you trust are continuing to fight for your health and answers. Six kiddos-you are definitely busier than me with 4. Needless to say, I have had to learn (the very hard way) to give myself grace. Not beat myself up with guilt for chores left undone, kid’s events not attended etc. How old are your kids? Learn to lean on them for some help around the house, and help with each-other, so you can be a more present, mama. Thinking about you.
If you ever need another mri, I always close my eyes before going in and don't open them until I'm out. I've never seen the inside of the machine bec I know I would prob freak out. While in there, I try to think of names from A-Z of boys and then of girls. It keeps my mind occupied and really helps. Thanks for sharing your story.
IV sedation ALWAYS in MR ask your neuro
@@Traceyi1000 I would have to disagree. I do what I described above and I'm fine. I've had several MRIs and my technique relaxes me while I'm in there. I'd rather not medicate if I don't have to.
Glad that works for you. I very much wish I was able to complete an MRI without sedation.
Thank you... you are so sweet. God bless you.
Susan Carson same to you!
Thank you for this 💛
Thank YOU! ❤️
I really, really hate that you are experiencing MS, but, at the same time, am really thankful I came across your video. I have most of your symptoms plus some uniquely mine but no lesions yet, so no diagnosis and no treatment. My GP has said MS from the start...I'm the healthiest "sick" person on earth! Sharing your journey in such detail and with such honesty is helpful. As a mom you will understand this: When my Dr asked about incontinence, I answered, "None yet, but at times it feels like when I was very pregnant and the baby kicked my bladder very hard"... #Urgency
Thank you for sharing.
Tina #purplestmomma , Thank you so much for your kindness and support. Were you able to watch the followup part 2 video? I brought up urgency. There are some great videos on here about MS mimickers. You may very well have MS, but making sure you aren’t misdiagnosed is just as important. Misdiagnosis could mean missing a curative treatment for another disease. Keep me posted!
Cassie Ski
You have reminded me of that. Yes, i watched Part 2.
It's so easy to get frustrated and it doesn't help when those glorious few docs we come across who look at ya like you're crazy! Lol I live in Texas so believe it or not NO ONE will test my for Lyme!! I go to Colorado camping almost every year..SURELY I could have been bitten by a deer tick 😶😝 Ugh. It's a beat down! Thank you, again, for reminding mothers, especially, to TCB☺
Tina #purplestmomma If you are able, try seeing a naturopath. Some people have more luck with them doing the proper lyme testing. You mentioned no lesions, did they image your cervical spine? If you are experiencing neurological symptoms, I would stay on top of the doctors to help you find the root cause.
Cassie Ski
You are SO helpful and knowledgeable 😊 I will find a naturopath. Great suggestion. I was actually diagnosed with Myasthenia Gravis by one neurologist, but the folks at UTSW/Dallas disagreed with that. Let my Naturopath journey begin! #ThanksCassie 😊
Tina #purplestmomma i am in the same boat.. they keep telling me its just anxiety. very frusterating :( i see your comment was 4 months ago, i hope youre doing better now❤️
Hi Cassie,
Thank you so much for sharing your story! I have watched many MS diagnosis stories, but yours is the best one I've heard.
I have had very weird, seemingly unrelated symptoms for several decades now, but in the past 2 years, my health has declined drastically. I feel absolutely horrible every day! The most debilitating symptoms are numbness, weakness, and pain in my feet and legs, and unrelenting fatigue. In 2 years' time, I have been tested for everything under the sun with all kinds of blood work, with everything coming out "fine".
At my insistence, I asked to see a neurologist last year, which was a disappointing and unfruitful experience. He asked me a bunch of questions, did a basic exam, and did testing by sticking needles in my muscles with an electrical current (can't remember what it's called?). At the end of the appointment, he said "you have neuropathy, and I can prescribe drugs for that". I already knew I had neuropathy, that was pretty obvious! But what is causing it is the question? He said come back in 2 months, but I never went back, and I never took the medication.
I have spent so much money and time trying to find out what's wrong with me, and I'm disgusted with the "medical system". No one takes me seriously, and no one cares enough to really try to figure out what is wrong. I've been to primary care doctors, the ER, naturopaths, chiropractors, you name it!
I'm losing hope, and getting more scared every day, as I continue to get worse.
Christine-my heart goes out to you! I was lucky to have someone listen to me, YOU know when something is wrong. Now, of course I don’t know if you have MS, but I would be darn suspicious and want to get in the hands of a good clinician. I need to do an video update, but I have since moves from MT to IN. I am SO lucky to be able to see Dr. Boster in Ohio. Where are you located? He can facilitate some telemed, and some people travel to see him. Worth a consult to see of you can get some answers. Thinking of you and thank you for the kind feedback.
@@cassieski8005 Thank you for your reply, Cassie! You're right, I definitely know something is wrong. I have a gut feeling it is MS, I have thought this for a while, but I can't get anyone to take me seriously. I think it is because I LOOK so healthy (which I am otherwise, except for my debilitating symptoms). People often go by looks alone, including doctors.
It's so interesting that you mentioned Dr. Boster. I actually just this morning discovered his channels, and have watched several videos, and seen his website! I live in CA, so it's probably not feasible to go see him. Also I have an HMO plan, which limits the doctors I can see.
I have a new primary care, who is a nurse practitioner, and I am going to push to be referred to a new neurologist. I want to have a brain MRI, to see if I have any lesions. My previous neurologist didn't bother to have an MRI done for me. 😒
Thank you so much Cassie, and I wish you good health on your journey 😊
@@christinelamb1167 look up themsmd on instagram (Marwa Kaisey) she is at Cedar S. and specializes in MS and mimicking diagnosis as well. She is amazing, and can do virtual consultations as well. (Apologies if I spelled her name wrong, at my son’s rugby game and going off memory💗).
@@cassieski8005 Thank you Cassie, you're so kind. ❤I will look her up!
Good Examples!
Thank you for taking the time to make these videos. Wish you’d make more, but how are you doing 3 years later? And are you taking the recommended MS medications? Or have you opted to other forms of treatment like dietary habits?
Stay tuned! I am coming back to UA-cam soon. In short, I am doing great. Lots to update. Thank you for your kind comment. ☺️
Gods love and care to you Cassie 💗
Thank you for sharing.😢
Hi, it's midnight and I cant sleep. I have MS (2014). Your experience is so similar to mine I had to search how to leave a comment just to post this. I left work today and cried all the way home. It was a day when I was feeling EVERYTHING. But feeling numb at the same time. You helped me so much. I thought I was dying until finding out I had MS. It's weird but it was sort of a relief. The worst part for me is the cognitive issues. I hate the thought that others will think I'm stupid or that something is wrong with me. Even though there are supportive people around me, I feel alone. Thankyou so much for the video. I am going to subscribe and learn operate UA-cam other than watching old movies. LOL. Thank you again and many blessings. I think I can sleep now.
iCAN You have no idea how your comment touched me. I started my day reading this message, and it filled my heart. It is hard to put yourself out there, but I do it for the sole purpose of helping people who are feeling alone in this thing called MS. We are in it together! Thank you so much for the effort you went through to leave a comment. Truly lifted me up. Thank you.
The speech delay is new and of course that coupled with the walker the dreaded look of pity.
I stopped talking unless I have to.
Can definitely understand where you are coming from.
Sleep is getting worse and God knows we all need sleep MS or not.
Do you take anything for sleep?
Thank you for sharing your story. You are so poised. I hope to be as strong as I go through this journey. ❤️
Very kind of you, thank you!
You're so strong and brave. I'm 26, active, I thought I was healthy until my life came to a halt with pain and fatigue. My legs have shooting electric pains. Numbness. My arms go numb at diff. Times. My fingers feel stiff. My jaw swells. A CT scan of my jaw shows Joint disease/osteoarthritis. In both joints of my jaw. Dr. Says usually see this type of Arthiritis in an older person. Uncommon in a younger person. I miss a lot of work and college because my body hurts. I don't know how to cope
Thank you.Went through exactly same emotions whilst being diagnosed.Good to hear from someone who umderstandsxx
Destany how are you doing now? I am so sorry you are in so much pain. I hope your physicians are helping you get ahead of that.
Cassie Ski Rheumatologist diagnosed me with Degenerative Arthritis due to a mechanical issue. He thinks since I was born so tiny at 1 pound, my bones were so fragile, in adulthood I developed Arthritis prematurely. All of my blood work for RA and Lupus were good. No signs of auto immune disease. The Arthritis may have spread to my spine that's why I have numbness tingling? One of my arms failed the reflex test when they hit your inside of your elbow with a rubber thing. I have little weird muscle twitching all over my body. The doctor is ordering something for arthritis called Celebrex. I am on medical leave from work right now which is stressful I have no income. How are you?
Here in Brazil, the Coimbra Protocol cures MS, in more than 90% of the cases. This is a cheap and painless treatment.
You should have your calcium and PTH levels checked. Sometimes you can have all those symptoms with hyperparathyroidism. (With normal thyroid levels)...
God bless you. ❤️
beatrice simpliciano thank you. ❤️
Very sad. I am very sorry to hear all this.
I loved your video! You are so strong ❤️ I started having numbness and tingling in both arms and feet. My feet are hot/cold. I’ve been weak and legs feel like jelly when I walk. No vision issues. This all started about a month ago. I was in ER twice because I was so depressed and weak. MRI came back normal but still having symptoms. They think my thyroid meds need adjusted but I’m still scared it all could be MS
Thank you for tour kind comment. Initially when I was experiencing symptoms, I was convinced it was my thyroid. As you are likely aware those symptoms can mimc each other. I am sorry you are goin through this. Glad you were able to get an MRI though!
@@cassieski8005I was diagnosed with Arnold Chiari Malformation. My symptoms are worsening every day. I’m waiting to see a neurosurgeon 😞
Jane, I am sorry to hear of your diagnosis, but glad you got some answers! There are a lot of diagnoses that mimic MS, and I am glad you were able to uncover yours! Curious as to how the initial MRI came back normal? Was it mis-read?
@@cassieski8005 I had it looked at a second time. No lesions to suggest MS. But they did see the Chiari the first time and referred me to a neurosurgeon. I’m still waiting thanks to COVID 😒
@@Jillybeej Did you started having all these symptoms after you had covid? I am having numbness& tingling in both hands and feet after my covid infection along with tremors. I am having my doubts but my doctors are all saying its post covid.
thanks for this video. and yes, i watched the whole thing lol. I'm waiting for my MRI day to come next week and trying not to fall down the rabbit hole too much until then. I've been really lucky in that the process has gone pretty fast for me. 3 months ago got vertigo, got better, then got weird headaches, and doctor jumped right to "lets just do an MRI to be safe", and I'm so thankful they're going directly to that step. I've been confirmed vit D defiant for over 6 months, so maybe that's why they're connecting the dots more quickly, idk. i'm almost more scared for them to say "you're brain is fine, we dont know whats wrong with you" more than to just say "yup its ms", because at least then there an answer.
K&F Kenn how are you doing?? Thinking about you.
What was it my friend
Great video ty! I have all of those symptoms and my doctor cant figure out what's wrong with me .. I'm overweight and diabetic type 2 they just say I have these symptoms from being overweight and the hand and leg numbness is neuropathy.. but I know my body and I know something is off ! I have had alot of balance problems last spring I was walking down the river bank and started getting vertigo and couldn't move which caused me to fall and I broke my wrist..and all the doctor told me is my iron is low..
Tim Fisher I am sorry to hear you have been struggling so much. No one knows your body as well as you do. Keep advocating for yourself and working towards a healthier you.
I used to work with 460 volt electricity so I can only imagine that much voltage without rubber lining on it insulation
“Props” to you! I wish you the best. I was diagnosed with POTS in 2017. I have dizziness, tachycardia, nausea, visual disturbances, fatigue, paresthesias, and mental clouding. However, I have had some electric pains (rare, brief) and numbness in my legs lately. I get intermittent numbness in the outside of my left leg. The inner aspect of both lower legs has been at least partially “numb” every day for a little over 2 months now. I had a normal brain MRI in 2017. I had a normal eye exam from a neuroophthalmologist last month. I am waiting on a neurology appointment. I’m not sure what to think, but I appreciate your video.
Larea92503 🤣 I love when viewers tell me “props”, because I know they watched it thorough. It was completely unintended, but has turned out to be a great sort of “inside joke” between my viewers and I, so thank you!
I am not too familiar with POTS, will have to read up on it. Your symptoms are interesting to say the least. Have you had an MRI of your spine?
Cassie Ski I have not had a spine MRI. I had an X-ray, which was normal. No one has encouraged me to do seek orthopedic treatment up to this point. For now, I have adjusted to the numbness, and I am hopeful that it is not serious.
How are you now mam..I am from india
You are awesome!
Thank you-you too!
I've been an MSer too since 2005!! Keep fighting!!!
❤️
The same year I was diagnosed. I had my first symptom in 94 at 15.
@@vonne2003 I wish you well dear..:)
I'm moving to montana at the end of the month and spoke with a hospital out there today. I am undiagnosed trying to get my mri done, insurance approved the brain but not the spine. I hope I can find help out there. I wish you the best!
Wishing you ALL the best as well. I recently moved to the Midwest and need to make an update video, I know.
@@cassieski8005 Found out I have stenosis in my spine that is crushng my nerves in all three parts of my spine, so not MS. My mother has MS, so we just weren't sure. The midwest is beautiful! Take care, looking forward to that update video. Stay well💕
I’ve was diagnosed with Lyme disease years ago and now have been told I have lesions on my brain with symptoms- - waiting to see a neurologist! Been 3 weeks already .
Be well Chaz! Lyme and MS can definitely mimic one another!
Thank you. You did a great job. I am just starting the process of finding out if I have it...I am scared. How are you doing now? I hope not worse.
I am so sorry. It is very scary, how are you doing now? To answer your question I am doing great! I have not had a relapse since the one I described in this video that led to my diagnosis. My treatment is working so far! MRIs have had no new activity. I will make an update video this year; that’s my goal!
I was just diagnosed with MS 3 days ago and I’m just trying to stay positive about it. I have a lot of similar symptoms as you do but some are different like my face goes numb more than my feet and my hands barely ever go numb. I also have Addison’s disease and hypothyroidism. I’m just glad I followed my gut feeling and had my MRI’s done.
Thank you for sharing your story as well. Did your Addison’s diagnosis make it harder for you to be heard by your care team that something else was going on?
Mri with or without contrast helped you to find lesion?
Stay strong! Don't procastinate like all wife, mother, daughter and even friends tend to do. Take care. Blessings, Latina 💜💜 💜💜 💜💜 💜💜
LaCondesaLatina agree!
Great description of MS symptoms . I had it 7 years I am now 51 years old man in the uk. I have just moved upto secondary progressive. Had all the tests you had and I had eye test in the hospital which was not nice as I have pancreatics and at the time was on morphine for the pain. Some how over dosed on the morphine and spent all day being sick. Ended up having to take a sick bag to the eye test. The got results. MS. Failed all 6 tests I had. But then they lost me for 2 years in the hospital. Back on track no. Got a lovely MS nurse who I see twice a year. But I can phone her any time. Just found your video. Now for number 2.speak soon stay well?
I really appreciate your feedback Howard. I am sorry your disease has progressed to SPMS. Are you on any therapies? Have you chosen to follow any of the diet/protocols yourself? Wishing you well Howard!
I haven’t gotten diagnosed yet but I have all the symptoms of MS. I had numbness in my feet then it went away then I have a numbness and tingling in my hands especially when I bend my head over it’s like a shock.
Sara Jane the shocking feeling you have is something I dealt with A LOT when going through my relapse. Fortunately, I have found relief from this symptom since starting my DMT. How have you been feeling now? Diagnosis?
great video!!
The Peachie Spoonie thank you!
Greeting,
Hope you are doing well, am your MS bro from Kuwait.
My golden advice for you is don't put everything on MS; which stands for MicroSoft.. as simple as this.
If your laptop/ desktop had a virus and the antivirus is not updated sure it will hang, slow performance, crash.. and these kind of problems.. the same is happening with us; we have a virus but our immune system is not protected so we are complaining from the symptoms.
By the way my advise is to stop cafein (stop drinking coffee/ tea) try one week sister and you will notice a big difference, and watch your nutrients; 1. Quality 2. Quantity 3. Timings.
FDA stands for Food&Drugs Association I think.
Thank you 😊 and sorry for disturbing
Mine started with the numbing of my tongue and within days it was the whole left side or my face/scalp/head. Had a CT at hospital and they diagnosed as Trigeminal Neuralgia, fastforward a few weeks and I'm in the hospital cause I could barely walk....3 MRIs and lots of test later final diagnosis...MS.
Thank you for sharing Terry. Hope you are doing well.
Thanks Cassie, yes that Remylating (sp) was great to read, if a new drug is in the works, I am all for that, just not the ones that do not cure,and side effects, I will not go there. I will not have my spinal fluid checked, for now, just not until there is more of a cure drug to get. My rude doctor called me! And I will try to be understanding, and calm down, the real cure is de stress, in life!
elana vlahandreas stress reduction is so important.
I am sitting here in tears right now after watching your video. I'm a mom who has been so sick with dizziness and crippling back pain for the last two weeks. I have been to a Dr 3 times in the past month for a band of pain around my chest, numbness in my hands, and ocular pain. The doctor has never even thought to have me get an MRI or see a neurologist. I have had a sinking feeling about MS for the past two weeks (during this insane period of absolutely not functioning...accompanied by major mom guilt) and have made yet another Dr's appt to discuss the possibility of MS and get started with the testing process. I'm just getting beginning this journey, but I am freaked out to say the least. Your video is so relatable. The other weird thing is, I'm pretty sure we live in the same city! I found your video on a google search for MS diagnosis stories, so it's crazy random. Wishing you the best of luck and all of the positive vibes!
Wow! Abbey Moore, I think we do live in the same city. I quick FB searched you. (You are stunning by the way). First, I am SO glad this video somehow helps you even in the slightest. It is hard putting yourself out there, but the payoffs are big when it helps a few people. Now, your symptoms sound painful, exhausting, and yes-somewhat like MS. That being said, try not to freak yourself out. There is a long list of differential diagnosis (MS Mimickers) that you’ll need to work through. Some are easy to deal with, some are worse than MS (in my opinion). I have to admit the banding you describe around your chest, sets off particular alarm bells in my head. Have you heard of the MS Hug? Abbey, mom guilt is no joke, but MS has taught me I HAVE to stop every now and then. I have to rest. I have to admit to myself I have limits. Etc. Let’s connect on FB, whether or not you do have MS, you clearly need some relief and answers from what you are going through. It thrills me that you stumbled upon this video-small world! Wishing you well!
Yes! Would love to connect on FB. Do you have an FB group? I have only recently learned of the "MS hug" and after doing an inventory of symptoms over the last couple of weeks it's prompted me to at least consider doing some testing for MS.
Abbey Moore I don’t have a FB group; I am part of other support groups. Maybe I should start a local MS Mom FB group. I had one mom connect with me via internet, then she randomly recognized me at work. It was nice to meet her in person, and she was able to come join me at the Walk MS event in May. Any way, I am not able to send you a friend request, go ahead and send me one if you would like. Would love to stay in touch.
Abbey Moore I would also like to suggest you start a log of any symptoms, as well as go back and date any other symptoms and their duration. Particularly your most recent ones.
Hi abbey, did u find out what it was?
This is the best personal MS video I’ve come across so far (very comprehensive in details). Thank you for posting! I just had my MRI’s (under medication) and blood work so now I’m just waiting for results.
You are so kind! Thank you for listening to me ramble. 😂 How are you doing?
Thank you for sharing this. My friend is in the hospital. After work her arm and leg started going numb, eventually she was basically paralyzed. They're thinking MS but they're saying they can't diagnose it unless it flares up again?
Give her an MRI? To Jaymi Bishop
One of the new McDonald criteria is disseminated in time and space. So if she only had activity in the brain (space) and not involving the spinal cord or vice versa, then time would be the qualifier. Still clinical history is the biggest factor in diagnosis. Coupled with MRI findings, sometimes spinal tap etc.
After my MRI in 2012 I received a call from my Neurologist on a Saturday morning. I was also very worried about a brain tumour. She said I had inflammation on my brain and spinal cord and it could be treated with steroids. I was so relieved that I said oh that’s not too serious then. She said yes it’s very serious, you have MS.
Miss Dog Lover I am so sorry. It can be confusing and scary beginning. Since that was 2012, how are you now?
I'm in tears. I'm waiting on an MRI appointment to be booked because of numbness/pins & needles in my arms & legs, vision problems & dizziness. I also have a lot of anxiety about the MRI :(
Miss Marmalade you are going to be okay! You are not alone. Ask for at a minimum a mild oral sedation prior to MRI. Thinking of you.
Did you have your MRI yet?
Ask for sedation.
If they can't do IV ask your doctor to call in some anti anxiety tabs so you can chill.
I had brain and entire spine with and without contrast it was a long exam but you can do it.
I was in the hospital so the nurse gave me meds before and was called halfway through to give me more medication.
If you have pain take some Advil before you start because you have to lie still for a long time.
Did you find out what the problem was?
How are you now
I had Tranverse Myeltis (lesions on the spinal cord and lost of sensation from my neck down) in 2014 2 years recovery. FND (limb weakness, headaches, dragging my legs) in 2017 until 2018. Now my left eye has gone blurry and now they think I have Optica Neuritis (MS) as the medication I was given for my optic nerve isn't working when it should be, so they believe this is the diagnoses but I am waiting for my MRI.
How are you doing now? Thank you for sharing.
Bless you ❤️🙏x
Thank you for this video. I have just one question. With MS, can you have a bunch of symptoms happening at one time, let’s say for about 2 months and then for 4 months, no symptoms then 2 months again etc etc??
Hi Rita. Yes, you can have multiple symptoms, at the same time. Those symptoms may disappear. Perhaps a different symptom or symptoms may come on. I recommend you see you General Practioner and get a referral to a Neurologist (NO MATTER HOW LONG IT TAKES TO GET THAT 1st VISIT). If the neuro recommends an MS neuro (this appointment might take even longer for a 1st time visit with a specialist). Please don't wait. More information on MS can be found with Dr. Aaron Boster of the Cleveland MS Clinic. He runs his own channel on UA-cam. Checkout all the videos. Good luck and I wish you better days. 😊
Cindy Roper thank you so much for your response. I’m currently being tested for MS and that’s just one of the things I’ve noticed. I will have so many symptoms happen to me at once and then nothing for a couple months, then it comes back 😞
Ria Ria Absolutely! In fact, that is sort of the hallmark of Relapsing Remitting MS. It comes and goes, comes and goes. You mentioned one of the key components; the symptoms last for weeks at a time. We aren’t Talking your foot was numb for an hour and went away. With MS your symptoms (relapses) last days, weeks, months. How are you doing now?
Same with me they mentioned ms 3 years ago because I have bilateral Atypical Trigeminal Neuralgia. Still 3 years later no answers. I'm low in Vitamin D, B1 and B6 I also have Iga deficiency
Omg this is exactly what I’m going through right now. It’s so hard to explain to people. Did it ever go away it’s been three months.
I was left with some residual permanent effects after that relapse. I did improve greatly though, meaning I made about an 80% recovery from that relapse. I hope you have found some relief Nicole.
Cassie Ski my leg came back but my arm shoulder blade and hand area (I’m sure you understand the whole area) has not came back then about six months later I had an awesome bout of optic neuritis while I was transferring a pt to a hospital 120 miles from home grr.
I’m done with mri waiting for the results to came out..but my doctor already suspected me with this disease according to my symptoms
anisah arshad, I hope you are doing well. Sorry this took me so long to reply.
You’re delightful.
That is kind, thank you!
Hi Cassie, it's my turn now, just had the lumbar punture, waiting on results...doesnt that suck, thanks for the video. This disease has destroyed my life, unbeknownst to me, I'm 57, 4 kids later and many relationships gone, it has taken its toll.....the key is, as you said, take control of your health and be your best advocate, because no one else will do q better job. Hugs and Prayers Cassie.
Xo
Donna Lemmo thinking about you. How did your results turn out? I am sorry you have suffered for so long.
Cassie Ski OMG, Cassie, how much time do you have? Lol So, listen to this.. I go for the puncture like I said and waiting on results....takes forever, (even when the bloods are submitted correctly to coincide with the puncture..Not-*MURPHYS LAW.....)anyways, finally they come back proteins -high, glucose high,- O-rings zero..what??? So the doctor because of my age and I did not know him (this is the neurologist now, not my practitioner 10 years ago) says he doesn't want to call it because of my age and cause I didnt make a big whopp about it 10 years ago..but I did!! so sends me to another neurologist to bear my soul once again...she is sending me for more MRIs of the thoracic spine and cervical spine and says unequivocally if there are lesions there it is definite.. because someone without MS would NEVER have lesions in those areas. OmG. I am a mess...deep breath..and says take some books home and after we can have THAT convo....holy hell batman!! To clarify he say 2% of O Rings in patients come back zero..
Cassie Ski It would be comical if not so serious....I just might do stand up after this...but I cant stand up!! Xo. Kidding Cassie..sometimes
Thank you