i see this video was a long time ago but i am female and currently working on my diagnosis. Thank u for being so positive. U are a huge help. I hope after all these years youre doing well. I love the Lord too and i believe he has protected you. ❤❤❤
I was diagnosed with Ppms a few yrs ago. Very scary but im working out so hard to not let it drag me down. Keep up your hard work my friend. Your story is inspiring
John, I'm touched by what you've shared here. I was diagnosed with relapsing-remitting in 2012. I know that means my path is different than yours, but I identify with everything you've described about your experience - the emotions, the frustrations, the hope. MS is one of those things no one can truly understand unless they've experienced it personally. There's great power in knowing we don't experience it alone. Thank you.
I was originally diagnosed with RRMS. Next time you see your neurologist ask him about PIRA. It is a new discovery and it is common with people with RRMS. If you were diagnosed in 2012 and have no progressive symptoms maybe you have escaped it. If so, apart from any relapses, your life may be close to normal.
My Buckeye brother never apologize for your disease to anyone. You will have many challenges ahead of you and will have to stay strong and positive just to be able to function later in life. When you get to the point where you struggle to get up and down flights of stairs, never give up. One step at a time......
I always thought the saying "one step at a time" was totally cliché... but not anymore. it applies both figuratively and literally to this fight we have.
Hi! I feel for you. Lean on God and the people of your fellowship. I wish you well. I have RRMS which I am struggling with. My recent EDDS score was not good-- it was 6.5. With love, I will pray for you, my friend. 11:23
Hey man! My story is more weirdly that this: One day I was walking down the beach and my both legs felt heavy and weak..(suddenly) then after 2 days my left harm and then my mouth and eyes last ... I really Dunno what was all that about 😶😶😶 Now i feel a bit better but lots of fatigue and tiredness all the time .. my legs are stiff since then .. I had a Brain MRI and no lesions (just one small lesion)
Hi John :) My name is Wendy, I am waiting for my spinal MRI (in 10 days time), have had 2 brain MRI's (first one was for diagnosis of Horner Syndrome), family doctor feels that I do have PPMS, but waiting on neurologist to see the MRI and then finally diagnose. I am already using a cane all the time, and a walker often, and I just recently got a mobility scooter so I can "walk" with my grandchildren. I was just searching for info on PPMS and came across your video. I want to say thankyou so much, and HELLO and big hugs to you and your family, as I am also a Witness, in British Columbia, Canada. Been married for 35 years, 3 sons, 6 grandchildren. It was so great to hear your positive comments about the future, as of course I feel the same. In fact, cute story, my 5 year old grandson said to me the other day that he thought it would take a long time for me to get better in the Paradise. I told him I didn't think so, as Jehovah would have a lot of work for us to do, to clean up the earth, and to plant gardens, so he might make me better quickly so I can help out. He thought about it for a while, and then decided that what would happen is that I would plant one plant, get a little bit better, plant another plant, get a little more better, etc. etc. In other words, the more I do, the quicker I will get better :) Maybe :) Anyway, thankyou for your video, it is great to hear of someone else in a similar situation, it does make it easier knowing that others are going through what you are. Take care of yourself!
+Ron or Wendy Benson Hello my sister! Yeah, I can't wait to get back to work! We are going to have a lot to do with the mess we will have to clean up so lets hope we are able to contribute fully quickly. When it talks about the lame, it says they will leap like a deer, so hopefully that will mean pretty much instantly the same way Jesus healed people when he was on Earth. "Get up, pick up your cot, and walk"... sounds good to me!
Thanks man, trying to! I hope you are also... We gotta keep the mental and emotional fight up cause that stuff will knock ya out for sure, every bit as tough as the physical fight, at least for me it is.
I’ve had my initial CSF come back as probably MS and have a MRI soon to confirm - this is giving me some hope to understand and cope with it, thank you.
I’m glad you have a listening ear whenever you pray, and your wife deals daily with human limitations as a nurse, and that you are helping ALOT of people come to terms with MS because YOU SHARE your journey. Thanks
Thank you Gloria, those were very kind words! It's so hard to come to terms with if I'm helping even just a little bit that is amazing to me. But so many of us are in the same boat.
Thank you for this video i was diagnosed 1 year ago with Ppms i started to noticed symptoms 2 years before that and did nothing because i was in denial due to my 2 aunts, Brother and now me with MS. I feel for you man everything you described i can remember it all i been declining for about 7 moths now it seems to be really fast and my wife is also worried. I also work at THD but im a DC Area Supervisor in 5089 rdc pittston. They have supported me all the way and my GM who has a huge heart said even if i end up in a wheel chair i still will have my job. Well thank you for your story. I dont believe in religion but i hope it helps you and modern med's will help those who need it.
+Holly Riggle Well, unfortunately things have declined enough that I wouldn't say my life is normal, but I'm still putting up the fight and getting around. Keep yourself informed and keep learning more ways in which you too can fight. Best wishes to you!
How are you now, John? It's been five years since you posted this helpful video. I was diagnosed, about a year and a half, two years. I'm 65 now. Initially, I noticed I was dragging my left leg/foot. I have PPMS. Since the summer things have become much worse. I'll be using a walker soon. I asked my OT guy to start with a cane. I, too, look like a drunk or stoned person. My feet legs are all over the place after walking for a bit. And talk about tired? I walk a couple blocks up to pick up some groceries and once I'm back I am exhausted! I was one who did a lot of walking, and not all that long ago, either. I compare myself to me, not to others because people will tell me, well, your a senior now, what do you expect? That has nothing to do with what is going on. I can't even do one push up. And this all happened over a few weeks during this past summer! I have an elliptical at home, in my apartment and was told not to use it because my foot has fallen off a couple of times. The feelings are somewhere between a spasm and numbness. Does any of this sound familiar to anyone else out there? I do feel so alone. I'm just getting together a so-called team together. I live in Toronto, Canada, so at least I live in a big city with options. I've mental health issues as well, so this whole thing is so overwhelming!
Yeah I understand all of that stuff. As far as how I'm doing right now... not good physically. I was able to stave off the decline a bit with diet and exercise but it has finally caught up with me and I'm having an extremely difficult time walking even very short distances, and that's even using a walker. Probably headed towards an electric wheelchair soon. I will do another video when I figure out more. Sorry it took so long to respond, I didn't see this reply until now.
I have PPMS as well.. I was diagnosed 3/26/2021.. I didn’t understand it but, the Doctor explained it to me.. My decline is ongoing but I’m dealing with it.. Thank You for this video I always felt NoOne unstood
Hi John. Thank you for sharing your story and your faith ❤️ I have been battling illness for 20 years now. I was actually diagnosed with Lupus about 13 years ago. My doctor originally thought I had MS but after a clear MRI on my head and a positive ANA she concluded it was Lupus. Well recent tests are negative now for Lupus and my symptoms are just crazy weird. I have really been struggling and started looking up some of my symptoms and I am wondering if I may have MS after all. I am seeing a neurologist on June 8 and my GP wants me to have an MRI on my head and my neck. I am also thinking I may need one on my spine and possibly a spinal tap if they can’t figure this out. I’ve prayed and prayed for healing or at least a proper diagnosis so that I can at least know what I’m dealing with and be able to get proper treatment. Though this is a real struggle I do have peace. After a good long, tearful, face on the floor, prayer session many years ago I was led to 2 Corinthians 12:9 (And he said unto me, my grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.) You are so blessed to have such an amazing wife. Take care and thanks again 🙏
So frustrating to not know what is going on with your body... I can understand that distress. I hope they find it out so at least you know what your nemesis is, and fight it accordingly. Yeah, that passage of the Bible is one of my favorites as well. We don't know exactly what the Apostle Paul's infirmity was, but he was able to accomplish so much by relying on the power from above instead of his own. It's a great example for us because we can also find an inner spiritual strength because we are almost forced to in order to deal with the physical struggles and weaknesses we face. Thank you so much for commenting because it sounds like we are like-minded when it comes to relying on power beyond our own.
+Ronald Qureshi Indeed... I have to remind myself to take one day at a time probably 10 times a day because I can get so caught up in it and in the worries about what tomorrow might bring.
hello! I recently got this symptom, I ran today for 30 mins for about 4kms and noticed foot drop in my left leg, I was unable to lift my left leg as much as my right leg. However, there was no pain at all and it became normal in about 2-3 minutes. However, for those 2-3 minutes, the heaviness/numbness in the foot and being unable to lift it fully was very evident. My dad has PPMS and I'm worried I have it now too. What do you guys think?
Yes there is treatment, my 22 year old daughter was diognosed with ppms when she was 18, she was litteraly falling apart physically. She was a bank teller untill two years ago, she got so bad and couldn't even button her shirt so they made her leave and get on disability. She had unbearing pain everywhere and numbness everywhere, constantly having diarriah and having to pee, stabbing pains everywhere. My son put her on a completely holistic diet and supliments, for almost 2 years she is like completely well, she goes to school full time and works part time, and goes to the gym every day, in other words to see her today you would not believe she has ppms
I am so glad she found a way to fight this disease and is doing so well! In her case, she must of been having serious inflammatory problems (aka immune response) around her nerves system causing the lack of signal and damage resulting in no muscle control and hormone imbalance. That is a huge reason why the holistic diet worked for her, it greatly reduces inflammation. For some reason, I do not have a problem with inflammation around my spinal cord, but it deteriorates anyway. They have absolutely no clue, but that is why any sort of anti-inflammatory drugs won't work either. It's ok though, this disease has taught me so much, and really opened my eyes to what is truly important in life. In a way, it has been a blessing... I just wish I would have been able to learn these things without going through this or having these limitations on what I really want to do. Some day though my hope is that God's Kingdom will fix all problems, and that faith helps me so much... I cannot even express how much it helps.
Well we do know very well how this happens and why? also today you can stop the insanity of illness, and get on the road to true recovery, you won't find it with Doctor's according to Doctors both me and my daughter's healings are considered mircales that defy science, but it's really not that complicated. find a true healer and walk away from the murders in white coat. I'm in such a hurry inbetween my break and so much more I would like to say, but just wanted to shot you a quick little info
@@saraancell4636 Can you share this wisdom with the rest of us? Specifically, what is this holistic diet that cured your daughter of MS? You can cure over 2.5 million people with your knowledge, so please share.
Hi, I sympathize with you. I've had a lot of the symptoms you have described. I have not been formally diagnosed with MS. I have been diagnosed with autoimmune and have an appt. in March with the Neurologist. I have lived with this most of my life, at least since my teens, possibly 9 years old. It was my normal so I didn't know anything was wrong. As I got older I started having more numbness and pain in my hips, legs, and feet. I would mention it to my doctors and it was somewhat dismissed and they said that I could see a Neurologist. For one reason or another I never made it to the neurologist. At the time I didn't even know what MS was, or for that matter what autoimmunity was. Most people didn't. This was in the late 90's and early 2000's. There's a lot more awareness now but still not enough. I only discovered what I have when my symptoms and pain got so bad and regular I couldn't tolerate it. At that point I tried going to my doctor but was dismissed worse than I had ever been. Later I decide to make a list of symptoms which ended up being 2-3 pages long. My doctor glanced at it and offered me some pain meds and dismissed me once again. These are different doctors in different cities. This forced me to do my own research to figure out what is wrong with me and why. In the process I did learn a lot including why and how certain foods do make autoimmunity, including MS, worse. It won't heal it or take it away. However, I have discovered that by giving up gluten, dairy, grains, soy and all other legumes my symptoms are much better. The severe pain has subsided and so far the only thing that activates severe pain is heat exposure; I think cold weather does too but don't have a lot of this since I live in FL. For me, and for most based on what my research has shown me, the worst food is gluten. I had to test this idea because I didn't want to give up gluten unless I really had to. After not eating gluten for some time and feeling better I decided to test it. I don't recall how long it took but I believe it was within hours or at most a day or two. I could feel something running through my whole body. It felt like a current but it was in my muscles. I soon realized it was my muscles contracting and becoming stiffer throughout my body. Within days I was having spasms, stiffness, and Charlie horses again. The worst is the muscle spasm I get in my neck, shoulder and back. It is extremely painful. I also know from past experience that if I would have continued to eat gluten I would have started having excruciating all over body pain again. The only thing that has caused this severe pain with spasticity again is exposure to the sun; I had no idea. After some more research I learned how heat can exacerbate symptoms. I remember always feeling worse after a hot bath but always assumed it must be the chemicals such as the chlorine in the water. I now realize it's the heat that is making me feel worse. It can take up to a week to notice symptoms from eating gluten for many with autoimmunity. MS is an autoimmune disease. I still deal with brain fog, varying blurry vision, rapid eye movement, insomnia, bad headaches. I still get stabs, pins, needles, and numbness. Still have vertigo, dizziness, tremors, spasticity and many other symptoms I'm forgetting to mention as my brain fog takes over. My incontinence is completely gone with this diet. All the other symptoms are much milder and less often. I do have very loud tinnitus in my right ear I can't seem to get rid of no matter what I do. I did experience bladder issues, spasticity in the bladder. This caused urgency, incontinence, trouble emptying, frequency. All my bladder issues have subsided since giving up gluten and the other offending foods. If you haven't already, please look into Dr. Terry Wahls and The Wahls Protocol. I don't follow it exactly but it does have good info and helps. I follow the 3rd one in her book, Wahls Paleo Plus. Gluten has been proven to cause issues. Look up molecular mimicry with gluten and autoimmunity. Not eating gluten ever again will prevent your symptoms from worsening and avoid many others. It doesn't happen over night. It takes some time, different for each individual. It really depends on the health of your gut flora. Make your gut healthy. Most of our immune system lives in our gut. Look into probiotics and even prebiotics. Dairy and soy are two other foods that you should definitely give up. For me legumes, grains, and eggs are also problematic. Also, look up ThePaleoMom.com. She is amazing. Checkout The Autoimmune Summit with Dr. Amy Myers and the Betrayal Series with Dr. Tom O'Bryan. These are all great sources. My story is very long and complex. Perhaps one day I will share it. But I wanted to share some of it with you today. Your video helps bring awareness to others and if I can help you in return or at least one other person then I am happy. Stay strong. Thanks for listening. I hope this info helps at least one person.
Thank you for your story. I hope they find out exactly what is going on with you even though you have learned to deal with it somewhat through an improved diet. I really do not notice a huge difference with or without glutton, but I noticed the bigger difference when it came to reducing processed foods in general. I'm at a point where I pretty much eat whatever is put in front of me, but my wife is a healthy eater and avoids glutton now also and makes most of the meals we eat. Diet is extremely important to overall health and it really does help people who have serious problems with inflammation in the nervous system.
Wow is that you talking or me I'm in the same boat just about 10 years on. My Dr from Baylor hit it on the head when he Dx me with PPMS "Well you have 10 years till You will be in a wheel chair" I beat him back by 3 years. Now me and my 3 third chair I'm just tough on them I have come to the understanding we need more understanding on whats really happening with PPMS. If your DR puts you on one of the Beta drugs please stay on it I did great till events stopped me from using it. This video was a very courageous thing for you to do and a a fellow PPMSer thanks you.
+jon scheffing Thanks man, I'm trying to delay that chair as much as possible but I know it's unavoidable. I've had to be in one or on a scooter during certain occasions that required lots of walking, but that is rare. Trying to fight it with diet, supplements and exercise (I know right... I'm crazy) but I really feel I have been giving it a run for it's money. I plan on being really hard on my chairs too haha. What we really need is a rolling man cave complete with an HD-TV and a mini fridge!
hi my name is Enrique and i also have MS, have you ever tried LDN or low dose naltroxone? if not you should take a look what is about I just started taking LDN. good luck !
John thanks for sharing that story with us.. i am trying to determine what is causing all my symptoms.which MRI helped you with the diagnose. . Cervical or thoracic.. it was with contrast?? Thanks for your help.. finally have you heard about the new treatment for ppms?
The neurologist pinpointed the thoracic region based on some reflex and coordination tests he conducted. The MRI was done with and without contrast. Not sure which one showed the atrophy on my cord, but it was my T3-6 that was atrophied. Yes I've heard about the new med approved for PPMS, but I've decided to stay far away from that stuff based on my own research. Treating myself naturally right now, and I'll get into that more in the next video. Thank you for watching and posting!
Hey John,I hope everything is going ok for you. I'm actually considered RRMS by my neurologist but it's been aggressive enough to where I had to retire on disability. I will be starting my third dmt, Tysabri in about a week. If there is any issues I'm not trying anymore of these questionable medications. I wish you the best and hope you can get well.
@@johng.8626 thank you for the shout out John. I very much appreciate it, hopefully the new year brings us both Better Health. Happy New Year to you brother and I hope to see you on UA-cam again.
Thanks man, you're really strong. I have suspected MS since 8 years ago and I really hope they give me the Scans and the spinal fluid tap, I'll do anything to find out what it is, I was also tested for RA, Lupus and Scleroderma, among others such as B12 deficiency, which in all came back fine, so my suspicion of MS is high, although my doctors kept refusing to do tests on me I have a new doctor and hope she refers me to another neurologist, I did see one before but he just shrugged me off without any tests apart from an EEG, to test for something else, which was fine at the time. I just hope and pray that you're doing well and that I find out what the hell is going on with me, although MS is highly suspected. I am having a relapse just now due to the weather I guess. Thanks for sharing your story man, it really gives me hope. :) May the God be always with you.
Camila, go to a good Neuro and ask for a spinal tap. This test shows a complete DNA of you. That's the way I found out. Insist because I have learned that men doctors have a hard time believing us women. Why -- don't know.
I don't always feel strong man, but we don't get breaks from this stuff so got to find some way to deal. I hope they find out what's going on with you!
I enjoyed that video very helpful. My Dr just told me he thinks I have MS. I have balance issues and I get killer cramps in my ribcage and back that drop me to the floor. I have an appointment with an MS Specialist next week to get my spinal tap but I am worried I might have a back cramp during the procedure.
i hope it isnt MS man! i didnt get any cramps with the spinal tap but i was really stupid after it and paid the price. I felt pretty decent so i went to work after 1 day off, big mistake, ended up with a headache that lasted 7 days, and it was a terrible one. listen to them when they tell ya to lay down for however many days.
+Jim Giraffe No dental work, at least not with mercury. Although I did sit for 3 hours while a dental student learned to clean my teeth... that left emotional scars though, not physical ones haha.
I\'m not sure but ,if anyone else needs to find out about alternative ms treatment options try Loctavan Simple Sclerosis Strategy (just google it ) ? Ive heard some interesting things about it and my m8 got excellent results with it.
It is now March 2019. I have the same symptoms, I ignored them. I am now in a wheelchair. I got diagnosed in august 2018. I am on a deep dive. I was also diagnosed with dementia with the PPMS. I am wondering how you are doing now!
I have been really struggling physically. Been putting off making another video, but I will soon. I just had some more MRI's done because I've taken a steep downhill dive myself over the last year. Hope you are dealing ok with the emotional struggle, I know for a fact that's just as hard if not harder.
Hi John My Son has MS,it hit him hard.Over five years my Son was tottaly paralized,he has only the use of his left arm and hand and that is getting weaker fast.He is tottaly dependant on his wife and myself to do what normal people do them selfs ,weakness effects his speech where you only catch a few words that he says,my child was a hard worker,same job for years,a home owener with his wife and they have two beautiful children! That's all changed for them all as he can't do the simplest thing for himself,he still tries to feed himself with his left hand, my heart breaks for him as I watch and I feed him,it's hard knowing the way my Son was so embarrassed the first time I had to clean him after he had abowel movement ,I said Son I cleaned your butt for years plus I'm your mum so no big deal,we both laughed at that,it's easy now,the embarrassed has gone! I should say my child is 52 years old.He has a safe place which is his chair,on that does everything,my problem with this is he hasn't slept in a bed for over five years only in the chair,he is on his third chair now,he lives in a chair,he has all the mobility items to move him from his chair to his commode and to the van when he has Dr appointment,which is only once or twice a year,,I don't think enough is or has been done for him..My Son has problems swallowing, he chockes a lot and gets very upset and afraid.At times he tells me he just wants to give up,that his life is no life..As a Mum you try to stay strong for your child,but when his wife gets home from work and I get in my car to go home the tears are tripping me,I would take my son's place in a heart beat,this is so unfair for all the people suffering from this.When he was first informed he had MS he told his family and friends he was going to beat this,that it would never get him down,That all changed first he walked with a cane,he cried going into a wheelchair now he cries just leaving his home,his Safe Place..I pray for something good to happen for my son,just one little thing to give him hope,but I know the damage that's been done will never be undone..I hope and pray that you yourself never have to go through what my child has had to endure both mentally and physically ! Please let me know how you are doing! Thanks,I really hope you read and respond to this as you may be able to tell me something new out there about MS..Thanks Again and Take care
I have ppms and stay in Scotland and feel you get no help from the ms clinic here had it for 8 years now but determination keeps me going and I'm going to get a referral to England as my friend has it and stays there and her doctor said he will take me as a patient so here's hoping at least might get something to try as never had any help in Scotland.
Yeah I do not receive any treatment here in the states either. But I have been doing my best to treat it naturally and I have had some good results. I'll talk more about that in my next video.
Hey man! My story is more weirdly that this: One day I was walking down the beach and my both legs felt heavy and weak..(suddenly) then after 2 days my left harm was tingling and then my mouth and eyes where inflamed last ... I really Dunno what was all that about 😶😶😶 Now i feel a bit better but lots of fatigue and tiredness all the time .. my legs are stiff since then .. I had a Brain MRI and no lesions (just one small lesion) So super strange and unexplained from the doctors .. I feel headaches tru the day and stiffness but not much as the beginning .. If u can tell me what u think.. that would be awesome Thanks mate!! 🤩
heya! I do not know bro, all I know is I've heard the same thing from several people. I hope they figure it out for ya cause not knowing has got to be driving you crazy. You are definitely not alone though, so much we do not understand about the nervous system.
It's a hard hustle alright. I'm in a wheelchair but the bowel and bladder issues, the pain, weakness, fatigue,, depression, eyesight issues. The invisible symptoms are the worst. Exploring TCM.
Pretty close to needing a wheelchair now to get around. I'm in that stage of not needing it for simple short things but also, not going anywhere because of how hard it is.
So amazing to share your story! I'm studying the effects of exercise on the different stages of MS and what the benefits and limitations are. Are you able to undertake any form of exercise, even just for example walking or very light exercises?
+Hannah Bolger For about 6 months I pushed myself really hard strengthening my core, lifting weights, riding on a stationary bike for 10 minutes, and then treading water in a pool for 10 minutes. I tried to do that about 3 times a week... but I can no longer do that level of exercise without passing out since my last decline. (That sounds crazy but I swear... I was so close to making myself pass out several times before I had to stop lol.) Anyway, I'm going to focus on just the treading water part for a bit and see if I can get through that. I'm so glad I spent those months that I was able to strengthening my core though... it really helped my balance.
Hello! I recently got this symptom, I ran today for 30 mins for about 4kms and noticed foot drop in my left leg, I was unable to lift my left leg as much as my right leg. However, there was no pain at all and it became normal in about 2-3 minutes. However, for those 2-3 minutes, the heaviness/numbness in the foot and being unable to lift it fully was very evident. My dad has PPMS and I'm worried I have it now too. What do you guys think?
It does sound like a troubling thing since your dad has PPMS, but it could be as simple as a pinched sciatic nerve. I'm sorry I have no answers for you, but if it sounds like something you should definitely mention to your doctor. I hope it ends up being an isolated instance!
I HAVE SECONDARY RELAPSING MSRR. SAME PROBLEM MY NEURO SAID CAN NOT DO ANY THING FOR ME. I HAVE BEEN BED BOUND SINCE 2008. ALREADY 8 YRS AND COUNTING. I GET DESPERATE OFTEN BUT EVENTUALLY MY FAITH PULL ME UP. I HAVE DECLINED A LOT THIS PAST YEAR. I AM LOOSING COMPLETLY THE USE OF ME LEFT HAND. AND WOULD YOU BELIEVED THAT CONTINUOUSLY I HAVE TO STRUGGLE TO GET 6 PHY. THERAPIES EVERY 3.5 MONTHS??? anyone listening please contact me. Thanks. ofelia
Hi John, It is now 2018. I am wondering how you are doing now. You story sounds a lot like mine. The needle pricks and numbness started about 10 years ago, fatigue and muscle pain. It has just slowly esculatated. I now use a cane. My muscles are bulging due to spastic myclonic jerks. I asked my doc which MS do I have they said they think I have SSMS, I think I have PPMS. I have not gone into remission. I keep waiting....Hope to here back from you to see how you are doing. God Bless You John.
Man... when I was looking at the symptoms and reading about them, I had really mixed emotions. For so long I had no idea what was wrong with me so it was like a revelation, but yeah, when I seen what MS really was and how serious it can be, it was definitely an "Oh crap..." moment.
Thanks for watching and commenting on it. Been a tough road for sure, but I still am doing what I can to stay positive. It has worked so far, but hasn't been easy to keep that mindset and takes constant effort, at least for me it does hehe. Let me know how your MRI turns out man, depending where you live and who is your doc, you never know when you're going to get your results. Hit me up on Facebook if ya want, got several other guys going through the same stuff that I keep in touch with. We try to encourage one another.
Fuck it I've got ms and it's been the making of me I've done things in the last 5 years that I would never of done and 56 now and I'll just keep chugging along. I'm going to get to 70+ and to be honest do I want to be really old in this world probably not... I'm lucky but beleave me no one dies of ms just stay really healthy eat well don't deprive yourself of treats and just keep saying to yourself what adventures am I going to have today.. It works for me...
I'm very sorry Gabby, I feel for ya. Every time I hear another person say they have been diagnosed, I get a little sick to my stomach because I know the fight in front of them. Fight it as much as you can, but also learn to accept help when the time comes that you need it, that was really hard for me to learn. Best wishes to you!
Thanks. It's great to talk to others that understand. I'm learning a lot. Like medication some people say diet and vitamins others believe medication. I decided medication & urself? Matt Embry has alot to say Dr Aaron Booster. Idk I'm just taking it all in. Btw I'm in Kansas City. Go Chief's.🏈😃
John hearing you are one of Jehovah’s Witness made me feel so elated. And most of all you are letting persons on UA-cam know about Jehovah and his heart must be over joyed. Soon Isiah 33:24 will be a reality. John just look at the world conditions. Soon John soon we will be truly satisfied in jehovahs new world. Also John my favorite scripture I hope you can read is psalms 94:19.
Wow you've been fighting for 11 years Iren! Sometimes seems so daunting a task to think about fighting this thing for that long. Thank you for reminding me it can be done.
غes John it can be. but with so much patience . I remember sometime I couldn't take how bad it was I worried about my sanity even Im not sure about the spelling hehe I thought of death even in some moments but then another day comes and it feels fine so I just keep going with it. always wondered why me simple arabian girl in school suddenly blind what did i do but later i found out my aunt got it too same yr but she was 45 I was 16. Im still walking talking all my senses are fine but the balance is a disaster lol like a child but oh well
after my sight faded at the exam i thought my glasses must of caused me that I've never known MS but then I was diagnosed and I still finished all the rest of the exams with one eye but with steroids it recovered I studied 2 english courses in my home country and uni 5 yrs then i came to scotland i finished 2 courses at college and volunteered for 20 months still no job till my MS stressed me out now I can't manage i guess but I'm happy that i did something at least despite my illness plus i met my bf thats enough for me just dont give up I took interferron between 2006 and 2009 then i stopped all treatment till today unless if i got a relapse i take steroids my doctor intents i take treatment i don't want too
Iren Smith yeah lol, my balance is crazy. If I don't use my cane people probably see me and think I'm drunk. I've gotten better at not falling so much, learning to take it slow and to steady yourself on something. I think your doing great Iren, it's a hard thing for a young person to deal with so your doing a good job! Try out the MS connection website, I'm a member on there as looneybiz. It's a nice place to go if you need to get advice on how to deal with things.
@@johng.8626 don't be sorry. We're not alone. Now we know. Peace be with you my friend from a far. May u have pain free days when possible. Gentle hugs
I am awaiting an MRI now. I've had weak legs for two years now it's in my arms severe left sided headaches and weird left sided symptoms. Muscle spams twitches electric shocks. I also failed my neuro exam. I am 41 and had to stop teaching due to severe fatigue and have been to doctors for 3 years with no answers. Went to one of my old family doctors and he said I've got to send you to a neuro.
I hope it's not MS, but you are definitely having some symptoms related to it and that MRI will tell more. keep us informed and know that i'm hoping the best for you and you can be strong enough to handle anything with lots of faith.
+Holly Riggle well, I was on Betaseron for 13 years; treatment that I would not recommend; now I am on Tysabri extended dose of 8 weeks its been 5 month-3 infusions; I feel so good! Hopefully, I will be free of visible symptoms in a couple of month.
+Holly Riggle I Have MS for 17 years and live live in Canada; if you are Ppms you don’t get any medication; I got new neurologist who transferred me from Ppms to Rrms and put me on Tysabri. Now for a week I been walking outside without even a cane despite, of crappy weather.
i see this video was a long time ago but i am female and currently working on my diagnosis. Thank u for being so positive. U are a huge help. I hope after all these years youre doing well. I love the Lord too and i believe he has protected you. ❤❤❤
Hello Brother. Just resting and listening to UA-cam MS stories.
I wish you and your wife strength and Jehovah’s continued blessings.
Thank you my sister! The same agape is returned!
HUGE respect to you your bravery ! I wish you well.
Thanks man!
I was diagnosed with Ppms a few yrs ago. Very scary but im working out so hard to not let it drag me down. Keep up your hard work my friend. Your story is inspiring
How is he doing? This video is 9 years old
@@RobdeKlerk-qg6lche might be really depressed but look on the bright side its not fatal
John, I'm touched by what you've shared here. I was diagnosed with relapsing-remitting in 2012. I know that means my path is different than yours, but I identify with everything you've described about your experience - the emotions, the frustrations, the hope. MS is one of those things no one can truly understand unless they've experienced it personally. There's great power in knowing we don't experience it alone. Thank you.
Thks! I feel now someone understand me.
I was originally diagnosed with RRMS. Next time you see your neurologist ask him about PIRA. It is a new discovery and it is common with people with RRMS. If you were diagnosed in 2012 and have no progressive symptoms maybe you have escaped it. If so, apart from any relapses, your life may be close to normal.
My Buckeye brother never apologize for your disease to anyone. You will have many challenges ahead of you and will have to stay strong and positive just to be able to function later in life. When you get to the point where you struggle to get up and down flights of stairs, never give up. One step at a time......
I always thought the saying "one step at a time" was totally cliché... but not anymore. it applies both figuratively and literally to this fight we have.
Hi! I feel for you. Lean on God and the people of your fellowship. I wish you well. I have RRMS which I am struggling with. My recent EDDS score was not good-- it was 6.5. With love, I will pray for you, my friend. 11:23
Your story is sad. But i'm delighted to see than you're optimistic and have support from the people you love.
Thnx for sharing..🙏🏽s for you and a swift recovery( remission).
I'm right there with you man. I was diagnosed about 5 years ago.
Very difficult on so many levels man, hope you find strength man, we all need so much of it.
Hey man!
My story is more weirdly that this:
One day I was walking down the beach and my both legs felt heavy and weak..(suddenly) then after 2 days my left harm and then my mouth and eyes last ... I really Dunno what was all that about 😶😶😶
Now i feel a bit better but lots of fatigue and tiredness all the time .. my legs are stiff since then .. I had a Brain MRI and no lesions (just one small lesion)
How are you now? Can you still walk?
Hi John :) My name is Wendy, I am waiting for my spinal MRI (in 10 days time), have had 2 brain MRI's (first one was for diagnosis of Horner Syndrome), family doctor feels that I do have PPMS, but waiting on neurologist to see the MRI and then finally diagnose. I am already using a cane all the time, and a walker often, and I just recently got a mobility scooter so I can "walk" with my grandchildren. I was just searching for info on PPMS and came across your video. I want to say thankyou so much, and HELLO and big hugs to you and your family, as I am also a Witness, in British Columbia, Canada. Been married for 35 years, 3 sons, 6 grandchildren. It was so great to hear your positive comments about the future, as of course I feel the same. In fact, cute story, my 5 year old grandson said to me the other day that he thought it would take a long time for me to get better in the Paradise. I told him I didn't think so, as Jehovah would have a lot of work for us to do, to clean up the earth, and to plant gardens, so he might make me better quickly so I can help out. He thought about it for a while, and then decided that what would happen is that I would plant one plant, get a little bit better, plant another plant, get a little more better, etc. etc. In other words, the more I do, the quicker I will get better :) Maybe :) Anyway, thankyou for your video, it is great to hear of someone else in a similar situation, it does make it easier knowing that others are going through what you are. Take care of yourself!
+Ron or Wendy Benson Hello my sister! Yeah, I can't wait to get back to work! We are going to have a lot to do with the mess we will have to clean up so lets hope we are able to contribute fully quickly. When it talks about the lame, it says they will leap like a deer, so hopefully that will mean pretty much instantly the same way Jesus healed people when he was on Earth. "Get up, pick up your cot, and walk"... sounds good to me!
Brother, I've had PPMS for 11 years (it started when I was 43). I'm hoping that you're kicking ass as much as possible every single day!
Thanks man, trying to! I hope you are also... We gotta keep the mental and emotional fight up cause that stuff will knock ya out for sure, every bit as tough as the physical fight, at least for me it is.
How long took your Diagnose story? And how are you now? Can you still walk? Thank you for your answer
I’ve had my initial CSF come back as probably MS and have a MRI soon to confirm - this is giving me some hope to understand and cope with it, thank you.
It's a very tough fight. I hope you find ways to help you along the way!
I’m glad you have a listening ear whenever you pray, and your wife deals daily with human limitations as a nurse, and that you are helping ALOT of people come to terms with MS because YOU SHARE your journey. Thanks
Thank you Gloria, those were very kind words! It's so hard to come to terms with if I'm helping even just a little bit that is amazing to me. But so many of us are in the same boat.
Thank You and be strong.
Thank you for this video i was diagnosed 1 year ago with Ppms i started to noticed symptoms 2 years before that and did nothing because i was in denial due to my 2 aunts, Brother and now me with MS. I feel for you man everything you described i can remember it all i been declining for about 7 moths now it seems to be really fast and my wife is also worried. I also work at THD but im a DC Area Supervisor in 5089 rdc pittston. They have supported me all the way and my GM who has a huge heart said even if i end up in a wheel chair i still will have my job. Well thank you for your story. I dont believe in religion but i hope it helps you and modern med's will help those who need it.
Being a recent dx with ppms it gives me hope to see that you are mobile and still leading a relatively normal life!!!!
+Holly Riggle Well, unfortunately things have declined enough that I wouldn't say my life is normal, but I'm still putting up the fight and getting around. Keep yourself informed and keep learning more ways in which you too can fight. Best wishes to you!
Thank you for sharing. From Australia 🇦🇺
How are you now, John? It's been five years since you posted this helpful video.
I was diagnosed, about a year and a half, two years. I'm 65 now. Initially, I noticed I was dragging my left leg/foot. I have PPMS. Since the summer things have become much worse. I'll be using a walker soon. I asked my OT guy to start with a cane. I, too, look like a drunk or stoned person. My feet legs are all over the place after walking for a bit. And talk about tired? I walk a couple blocks up to pick up some groceries and once I'm back I am exhausted! I was one who did a lot of walking, and not all that long ago, either. I compare myself to me, not to others because people will tell me, well, your a senior now, what do you expect? That has nothing to do with what is going on. I can't even do one push up. And this all happened over a few weeks during this past summer! I have an elliptical at home, in my apartment and was told not to use it because my foot has fallen off a couple of times. The feelings are somewhere between a spasm and numbness. Does any of this sound familiar to anyone else out there? I do feel so alone. I'm just getting together a so-called team together. I live in Toronto, Canada, so at least I live in a big city with options. I've mental health issues as well, so this whole thing is so overwhelming!
Yeah I understand all of that stuff. As far as how I'm doing right now... not good physically. I was able to stave off the decline a bit with diet and exercise but it has finally caught up with me and I'm having an extremely difficult time walking even very short distances, and that's even using a walker. Probably headed towards an electric wheelchair soon. I will do another video when I figure out more. Sorry it took so long to respond, I didn't see this reply until now.
I have PPMS as well.. I was diagnosed 3/26/2021.. I didn’t understand it but, the Doctor explained it to me.. My decline is ongoing but I’m dealing with it.. Thank You for this video I always felt NoOne unstood
Hi John. Thank you for sharing your story and your faith ❤️ I have been battling illness for 20 years now. I was actually diagnosed with Lupus about 13 years ago. My doctor originally thought I had MS but after a clear MRI on my head and a positive ANA she concluded it was Lupus. Well recent tests are negative now for Lupus and my symptoms are just crazy weird. I have really been struggling and started looking up some of my symptoms and I am wondering if I may have MS after all. I am seeing a neurologist on June 8 and my GP wants me to have an MRI on my head and my neck. I am also thinking I may need one on my spine and possibly a spinal tap if they can’t figure this out. I’ve prayed and prayed for healing or at least a proper diagnosis so that I can at least know what I’m dealing with and be able to get proper treatment. Though this is a real struggle I do have peace. After a good long, tearful, face on the floor, prayer session many years ago I was led to 2 Corinthians 12:9 (And he said unto me, my grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.) You are so blessed to have such an amazing wife. Take care and thanks again 🙏
So frustrating to not know what is going on with your body... I can understand that distress. I hope they find it out so at least you know what your nemesis is, and fight it accordingly. Yeah, that passage of the Bible is one of my favorites as well. We don't know exactly what the Apostle Paul's infirmity was, but he was able to accomplish so much by relying on the power from above instead of his own. It's a great example for us because we can also find an inner spiritual strength because we are almost forced to in order to deal with the physical struggles and weaknesses we face. Thank you so much for commenting because it sounds like we are like-minded when it comes to relying on power beyond our own.
Very helpful John. Thank you. I go through the same things. Im still in denial. One day at a time.
+Ronald Qureshi Indeed... I have to remind myself to take one day at a time probably 10 times a day because I can get so caught up in it and in the worries about what tomorrow might bring.
hello! I recently got this symptom, I ran today for 30 mins for about 4kms and noticed foot drop in my left leg, I was unable to lift my left leg as much as my right leg. However, there was no pain at all and it became normal in about 2-3 minutes. However, for those 2-3 minutes, the heaviness/numbness in the foot and being unable to lift it fully was very evident. My dad has PPMS and I'm worried I have it now too. What do you guys think?
Yes there is treatment, my 22 year old daughter was diognosed with ppms when she was 18, she was litteraly falling apart physically. She was a bank teller untill two years ago, she got so bad and couldn't even button her shirt so they made her leave and get on disability. She had unbearing pain everywhere and numbness everywhere, constantly having diarriah and having to pee, stabbing pains everywhere. My son put her on a completely holistic diet and supliments, for almost 2 years she is like completely well, she goes to school full time and works part time, and goes to the gym every day, in other words to see her today you would not believe she has ppms
I am so glad she found a way to fight this disease and is doing so well! In her case, she must of been having serious inflammatory problems (aka immune response) around her nerves system causing the lack of signal and damage resulting in no muscle control and hormone imbalance. That is a huge reason why the holistic diet worked for her, it greatly reduces inflammation. For some reason, I do not have a problem with inflammation around my spinal cord, but it deteriorates anyway. They have absolutely no clue, but that is why any sort of anti-inflammatory drugs won't work either. It's ok though, this disease has taught me so much, and really opened my eyes to what is truly important in life. In a way, it has been a blessing... I just wish I would have been able to learn these things without going through this or having these limitations on what I really want to do. Some day though my hope is that God's Kingdom will fix all problems, and that faith helps me so much... I cannot even express how much it helps.
Well we do know very well how this happens and why? also today you can stop the insanity of illness, and get on the road to true recovery, you won't find it with Doctor's according to Doctors both me and my daughter's healings are considered mircales that defy science, but it's really not that complicated. find a true healer and walk away from the murders in white coat. I'm in such a hurry inbetween my break and so much more I would like to say, but just wanted to shot you a quick little info
Amen, But the Lord tells us, my people perish from lack of wisdom, now I am bringing you wisdom.
@@saraancell4636 can you tell me more about the holistic diet?
@@saraancell4636 Can you share this wisdom with the rest of us?
Specifically, what is this holistic diet that cured your daughter of MS?
You can cure over 2.5 million people with your knowledge, so please share.
Hi,
I sympathize with you. I've had a lot of the symptoms you have described. I have not been formally diagnosed with MS. I have been diagnosed with autoimmune and have an appt. in March with the Neurologist. I have lived with this most of my life, at least since my teens, possibly 9 years old. It was my normal so I didn't know anything was wrong. As I got older I started having more numbness and pain in my hips, legs, and feet. I would mention it to my doctors and it was somewhat dismissed and they said that I could see a Neurologist. For one reason or another I never made it to the neurologist. At the time I didn't even know what MS was, or for that matter what autoimmunity was. Most people didn't. This was in the late 90's and early 2000's. There's a lot more awareness now but still not enough. I only discovered what I have when my symptoms and pain got so bad and regular I couldn't tolerate it. At that point I tried going to my doctor but was dismissed worse than I had ever been. Later I decide to make a list of symptoms which ended up being 2-3 pages long. My doctor glanced at it and offered me some pain meds and dismissed me once again. These are different doctors in different cities. This forced me to do my own research to figure out what is wrong with me and why. In the process I did learn a lot including why and how certain foods do make autoimmunity, including MS, worse. It won't heal it or take it away. However, I have discovered that by giving up gluten, dairy, grains, soy and all other legumes my symptoms are much better. The severe pain has subsided and so far the only thing that activates severe pain is heat exposure; I think cold weather does too but don't have a lot of this since I live in FL. For me, and for most based on what my research has shown me, the worst food is gluten. I had to test this idea because I didn't want to give up gluten unless I really had to. After not eating gluten for some time and feeling better I decided to test it. I don't recall how long it took but I believe it was within hours or at most a day or two. I could feel something running through my whole body. It felt like a current but it was in my muscles. I soon realized it was my muscles contracting and becoming stiffer throughout my body. Within days I was having spasms, stiffness, and Charlie horses again. The worst is the muscle spasm I get in my neck, shoulder and back. It is extremely painful. I also know from past experience that if I would have continued to eat gluten I would have started having excruciating all over body pain again. The only thing that has caused this severe pain with spasticity again is exposure to the sun; I had no idea. After some more research I learned how heat can exacerbate symptoms. I remember always feeling worse after a hot bath but always assumed it must be the chemicals such as the chlorine in the water. I now realize it's the heat that is making me feel worse. It can take up to a week to notice symptoms from eating gluten for many with autoimmunity. MS is an autoimmune disease.
I still deal with brain fog, varying blurry vision, rapid eye movement, insomnia, bad headaches. I still get stabs, pins, needles, and numbness. Still have vertigo, dizziness, tremors, spasticity and many other symptoms I'm forgetting to mention as my brain fog takes over. My incontinence is completely gone with this diet. All the other symptoms are much milder and less often. I do have very loud tinnitus in my right ear I can't seem to get rid of no matter what I do. I did experience bladder issues, spasticity in the bladder. This caused urgency, incontinence, trouble emptying, frequency. All my bladder issues have subsided since giving up gluten and the other offending foods.
If you haven't already, please look into Dr. Terry Wahls and The Wahls Protocol. I don't follow it exactly but it does have good info and helps. I follow the 3rd one in her book, Wahls Paleo Plus.
Gluten has been proven to cause issues. Look up molecular mimicry with gluten and autoimmunity. Not eating gluten ever again will prevent your symptoms from worsening and avoid many others. It doesn't happen over night. It takes some time, different for each individual. It really depends on the health of your gut flora. Make your gut healthy. Most of our immune system lives in our gut. Look into probiotics and even prebiotics. Dairy and soy are two other foods that you should definitely give up. For me legumes, grains, and eggs are also problematic. Also, look up ThePaleoMom.com. She is amazing. Checkout The Autoimmune Summit with Dr. Amy Myers and the Betrayal Series with Dr. Tom O'Bryan. These are all great sources.
My story is very long and complex. Perhaps one day I will share it. But I wanted to share some of it with you today. Your video helps bring awareness to others and if I can help you in return or at least one other person then I am happy. Stay strong.
Thanks for listening. I hope this info helps at least one person.
Thank you for your story. I hope they find out exactly what is going on with you even though you have learned to deal with it somewhat through an improved diet. I really do not notice a huge difference with or without glutton, but I noticed the bigger difference when it came to reducing processed foods in general. I'm at a point where I pretty much eat whatever is put in front of me, but my wife is a healthy eater and avoids glutton now also and makes most of the meals we eat. Diet is extremely important to overall health and it really does help people who have serious problems with inflammation in the nervous system.
God bless u!!! Lots of luck ur way!
Thx man, you too.
They officially diagnosed me with PPMS in October of 2011. Starting in Summer of '09 I started having spasms and bladder issues. PPMS drives me nuts.
Wow is that you talking or me I'm in the same boat just about 10 years on. My Dr from Baylor hit it on the head when he Dx me with PPMS "Well you have 10 years till You will be in a wheel chair" I beat him back by 3 years. Now me and my 3 third chair I'm just tough on them I have come to the understanding we need more understanding on whats really happening with PPMS. If your DR puts you on one of the Beta drugs please stay on it I did great till events stopped me from using it. This video was a very courageous thing for you to do and a a fellow PPMSer thanks you.
+jon scheffing Thanks man, I'm trying to delay that chair as much as possible but I know it's unavoidable. I've had to be in one or on a scooter during certain occasions that required lots of walking, but that is rare. Trying to fight it with diet, supplements and exercise (I know right... I'm crazy) but I really feel I have been giving it a run for it's money. I plan on being really hard on my chairs too haha. What we really need is a rolling man cave complete with an HD-TV and a mini fridge!
I agree. We need more cooperation from the doctors and the whole health system, and the National MS Association.
hi my name is Enrique and i also have MS, have you ever tried LDN or low dose naltroxone? if not you should take a look what is about I just started taking LDN. good luck !
John thanks for sharing that story with us.. i am trying to determine what is causing all my symptoms.which MRI helped you with the diagnose. . Cervical or thoracic.. it was with contrast?? Thanks for your help.. finally have you heard about the new treatment for ppms?
The neurologist pinpointed the thoracic region based on some reflex and coordination tests he conducted. The MRI was done with and without contrast. Not sure which one showed the atrophy on my cord, but it was my T3-6 that was atrophied. Yes I've heard about the new med approved for PPMS, but I've decided to stay far away from that stuff based on my own research. Treating myself naturally right now, and I'll get into that more in the next video. Thank you for watching and posting!
Brother i hope your decline stops and i wish you all the best
God bless u brother
thx man, you too!
Hey John,I hope everything is going ok for you. I'm actually considered RRMS by my neurologist but it's been aggressive enough to where I had to retire on disability. I will be starting my third dmt, Tysabri in about a week. If there is any issues I'm not trying anymore of these questionable medications. I wish you the best and hope you can get well.
Thank you same to you man. Hard to deal with that's for sure, I hope you find ways to help you cope with it al.
@@johng.8626 thank you for the shout out John. I very much appreciate it, hopefully the new year brings us both Better Health. Happy New Year to you brother and I hope to see you on UA-cam again.
Thanks man, you're really strong. I have suspected MS since 8 years ago and I really hope they give me the Scans and the spinal fluid tap, I'll do anything to find out what it is, I was also tested for RA, Lupus and Scleroderma, among others such as B12 deficiency, which in all came back fine, so my suspicion of MS is high, although my doctors kept refusing to do tests on me I have a new doctor and hope she refers me to another neurologist, I did see one before but he just shrugged me off without any tests apart from an EEG, to test for something else, which was fine at the time. I just hope and pray that you're doing well and that I find out what the hell is going on with me, although MS is highly suspected. I am having a relapse just now due to the weather I guess. Thanks for sharing your story man, it really gives me hope. :) May the God be always with you.
Camila, go to a good Neuro and ask for a spinal tap. This test shows a complete DNA of you. That's the way I found out. Insist because I have learned that men doctors have a hard time believing us women. Why -- don't know.
Ofelia Naveira Thank you I will try, it's just hard with this system here you don't have much choice sometimes in the doctor you get but I'll try.
I don't always feel strong man, but we don't get breaks from this stuff so got to find some way to deal. I hope they find out what's going on with you!
Sorry you're going through this. Prayers for you and your family. Go Blue however :).
*Gasp* haha thanks man. Appreciate it. You guys need a better coach!
Same CSF results.
I enjoyed that video very helpful. My Dr just told me he thinks I have MS. I have balance issues and I get killer cramps in my ribcage and back that drop me to the floor. I have an appointment with an MS Specialist next week to get my spinal tap but I am worried I might have a back cramp during the procedure.
i hope it isnt MS man! i didnt get any cramps with the spinal tap but i was really stupid after it and paid the price. I felt pretty decent so i went to work after 1 day off, big mistake, ended up with a headache that lasted 7 days, and it was a terrible one. listen to them when they tell ya to lay down for however many days.
Hello John... How are you now
Did you have much dental work done prior to onset?
if you have amalgam fillings the mercury from those leaching into your body can mimic ms.
+Jim Giraffe No dental work, at least not with mercury. Although I did sit for 3 hours while a dental student learned to clean my teeth... that left emotional scars though, not physical ones haha.
I\'m not sure but ,if anyone else needs to find out about alternative ms treatment options try Loctavan Simple Sclerosis Strategy (just google it ) ? Ive heard some interesting things about it and my m8 got excellent results with it.
It is now March 2019. I have the same symptoms, I ignored them. I am now in a wheelchair. I got diagnosed in august 2018. I am on a deep dive. I was also diagnosed with dementia with the PPMS. I am wondering how you are doing now!
I have been really struggling physically. Been putting off making another video, but I will soon. I just had some more MRI's done because I've taken a steep downhill dive myself over the last year. Hope you are dealing ok with the emotional struggle, I know for a fact that's just as hard if not harder.
John Gensamer love to you brother ❣️
@@mooskamoo Thx man, agape sent your way too!
Hi John My Son has MS,it hit him hard.Over five years my Son was tottaly paralized,he has only the use of his left arm and hand and that is getting weaker fast.He is tottaly dependant on his wife and myself to do what normal people do them selfs ,weakness effects his speech where you only catch a few words that he says,my child was a hard worker,same job for years,a home owener with his wife and they have two beautiful children! That's all changed for them all as he can't do the simplest thing for himself,he still tries to feed himself with his left hand, my heart breaks for him as I watch and I feed him,it's hard knowing the way my Son was so embarrassed the first time I had to clean him after he had abowel movement ,I said Son I cleaned your butt for years plus I'm your mum so no big deal,we both laughed at that,it's easy now,the embarrassed has gone! I should say my child is 52 years old.He has a safe place which is his chair,on that does everything,my problem with this is he hasn't slept in a bed for over five years only in the chair,he is on his third chair now,he lives in a chair,he has all the mobility items to move him from his chair to his commode and to the van when he has Dr appointment,which is only once or twice a year,,I don't think enough is or has been done for him..My Son has problems swallowing, he chockes a lot and gets very upset and afraid.At times he tells me he just wants to give up,that his life is no life..As a Mum you try to stay strong for your child,but when his wife gets home from work and I get in my car to go home the tears are tripping me,I would take my son's place in a heart beat,this is so unfair for all the people suffering from this.When he was first informed he had MS he told his family and friends he was going to beat this,that it would never get him down,That all changed first he walked with a cane,he cried going into a wheelchair now he cries just leaving his home,his Safe Place..I pray for something good to happen for my son,just one little thing to give him hope,but I know the damage that's been done will never be undone..I hope and pray that you yourself never have to go through what my child has had to endure both mentally and physically ! Please let me know how you are doing! Thanks,I really hope you read and respond to this as you may be able to tell me something new out there about MS..Thanks Again and Take care
That's great, to hear your story. My mom and myself both have all those symptoms. We saw neurologists. They did nothing. CANADA. great country eh!
I was fortunate, I hope they find out what is going on for you guys.
I have ppms and stay in Scotland and feel you get no help from the ms clinic here had it for 8 years now but determination keeps me going and I'm going to get a referral to England as my friend has it and stays there and her doctor said he will take me as a patient so here's hoping at least might get something to try as never had any help in Scotland.
Yeah I do not receive any treatment here in the states either. But I have been doing my best to treat it naturally and I have had some good results. I'll talk more about that in my next video.
Hey man!
My story is more weirdly that this:
One day I was walking down the beach and my both legs felt heavy and weak..(suddenly) then after 2 days my left harm was tingling and then my mouth and eyes where inflamed last ... I really Dunno what was all that about 😶😶😶
Now i feel a bit better but lots of fatigue and tiredness all the time .. my legs are stiff since then .. I had a Brain MRI and no lesions (just one small lesion)
So super strange and unexplained from the doctors .. I feel headaches tru the day and stiffness but not much as the beginning ..
If u can tell me what u think.. that would be awesome
Thanks mate!! 🤩
heya! I do not know bro, all I know is I've heard the same thing from several people. I hope they figure it out for ya cause not knowing has got to be driving you crazy. You are definitely not alone though, so much we do not understand about the nervous system.
did they put dye in your mri to see the lesions?
Yeah I had with and without contrast
plz check Terry Wahls diet? really helpful for me...I'm RRMSer I know they r not the same but try plz
It's a hard hustle alright. I'm in a wheelchair but the bowel and bladder issues, the pain, weakness, fatigue,, depression, eyesight issues. The invisible symptoms are the worst. Exploring TCM.
Pretty close to needing a wheelchair now to get around. I'm in that stage of not needing it for simple short things but also, not going anywhere because of how hard it is.
Oh the spinal tap headache. Terrible it lasted almost 2 weeks.
It felt the same as the headache that came with spinal meningitis
So amazing to share your story! I'm studying the effects of exercise on the different stages of MS and what the benefits and limitations are. Are you able to undertake any form of exercise, even just for example walking or very light exercises?
+Hannah Bolger For about 6 months I pushed myself really hard strengthening my core, lifting weights, riding on a stationary bike for 10 minutes, and then treading water in a pool for 10 minutes. I tried to do that about 3 times a week... but I can no longer do that level of exercise without passing out since my last decline. (That sounds crazy but I swear... I was so close to making myself pass out several times before I had to stop lol.) Anyway, I'm going to focus on just the treading water part for a bit and see if I can get through that. I'm so glad I spent those months that I was able to strengthening my core though... it really helped my balance.
+John Gensamer Cheers John. Yeah I have been reading on water exercises being a great way of exercising. Thank you for responding :)
Hello! I recently got this symptom, I ran today for 30 mins for about 4kms and noticed foot drop in my left leg, I was unable to lift my left leg as much as my right leg. However, there was no pain at all and it became normal in about 2-3 minutes. However, for those 2-3 minutes, the heaviness/numbness in the foot and being unable to lift it fully was very evident. My dad has PPMS and I'm worried I have it now too. What do you guys think?
It does sound like a troubling thing since your dad has PPMS, but it could be as simple as a pinched sciatic nerve. I'm sorry I have no answers for you, but if it sounds like something you should definitely mention to your doctor. I hope it ends up being an isolated instance!
@@johng.8626 I hope so too man! Thanks
I HAVE SECONDARY RELAPSING MSRR. SAME PROBLEM MY NEURO SAID CAN NOT DO ANY THING FOR ME. I HAVE BEEN BED BOUND SINCE 2008. ALREADY 8 YRS AND COUNTING. I GET DESPERATE OFTEN BUT EVENTUALLY MY FAITH PULL ME UP. I HAVE DECLINED A LOT THIS PAST YEAR. I AM LOOSING COMPLETLY THE USE OF ME LEFT HAND. AND WOULD YOU BELIEVED THAT CONTINUOUSLY I HAVE TO STRUGGLE TO GET 6 PHY. THERAPIES EVERY 3.5 MONTHS??? anyone listening please contact me. Thanks. ofelia
Wow you have been through so much already... I hope your faith continues to build you up through such a troublesome physical struggle.
Hi John, It is now 2018. I am wondering how you are doing now. You story sounds a lot like mine. The needle pricks and numbness started about 10 years ago, fatigue and muscle pain. It has just slowly esculatated. I now use a cane. My muscles are bulging due to spastic myclonic jerks. I asked my doc which MS do I have they said they think I have SSMS, I think I have PPMS. I have not gone into remission. I keep waiting....Hope to here back from you to see how you are doing. God Bless You John.
I will make another video soon, it has not been a good year physically. I hope yours has been better!
You look so familiar. Have you given any talks over zoom?
Not myself, but my brother does and we look similar.
Oh okay lol. Well I hope you're doing good. My doctor suspects MS...we need the new world. Thankful for the hope, stay positive🙂
'Ohh crap...' yep, i know the feeling
Man... when I was looking at the symptoms and reading about them, I had really mixed emotions. For so long I had no idea what was wrong with me so it was like a revelation, but yeah, when I seen what MS really was and how serious it can be, it was definitely an "Oh crap..." moment.
My brain MRI is this Friday.
( thanks for the video, though. It's very helpful, and a little inspiring)
Thanks for watching and commenting on it. Been a tough road for sure, but I still am doing what I can to stay positive. It has worked so far, but hasn't been easy to keep that mindset and takes constant effort, at least for me it does hehe. Let me know how your MRI turns out man, depending where you live and who is your doc, you never know when you're going to get your results. Hit me up on Facebook if ya want, got several other guys going through the same stuff that I keep in touch with. We try to encourage one another.
My chain was approximately 'ohh crap' -> 'I've always been good and kind to everyone so why me?' -> 'universe doesn't care about us as individuals'
Please update us, your not alone i have ms as well new sub x
I will try to make a new video soon! MS has definitely caught up to me physically. I need to make a new video soon.
Fuck it I've got ms and it's been the making of me I've done things in the last 5 years that I would never of done and 56 now and I'll just keep chugging along. I'm going to get to 70+ and to be honest do I want to be really old in this world probably not... I'm lucky but beleave me no one dies of ms just stay really healthy eat well don't deprive yourself of treats and just keep saying to yourself what adventures am I going to have today.. It works for me...
I got the rms but now ppms
Pain for no reason, memory fatigue, recognition concentration stress weird walk
Just diagnosed with ms
I'm very sorry Gabby, I feel for ya. Every time I hear another person say they have been diagnosed, I get a little sick to my stomach because I know the fight in front of them. Fight it as much as you can, but also learn to accept help when the time comes that you need it, that was really hard for me to learn. Best wishes to you!
Thanks. It's great to talk to others that understand. I'm learning a lot. Like medication some people say diet and vitamins others believe medication. I decided medication & urself? Matt Embry has alot to say Dr Aaron Booster. Idk I'm just taking it all in. Btw I'm in Kansas City. Go Chief's.🏈😃
Wow. Sounds like me. I’m still waiting for a neuro to give me a dx.
I went years without knowing what or if there was something wrong with me, can drive a person insane so I understand your struggle man.
John hearing you are one of Jehovah’s Witness made me feel so elated. And most of all you are letting persons on UA-cam know about Jehovah and his heart must be over joyed. Soon Isiah 33:24 will be a reality. John just look at the world conditions. Soon John soon we will be truly satisfied in jehovahs new world. Also John my favorite scripture I hope you can read is psalms 94:19.
Thanks my sister! Our hope is critical!
Can you get on a stem cell trial? It does wonders!!!
Lula Alder does it really?
Mine is SPMS. Its true what they say about SPMS
Yeah man, it's the worst of both worlds. Hope you find the strength to go through all that crap.
I got everything since age 16 now im 27 and my MS developed to PPMS my MRI scan looks like a tree not brain
Wow you've been fighting for 11 years Iren! Sometimes seems so daunting a task to think about fighting this thing for that long. Thank you for reminding me it can be done.
غes John it can be. but with so much patience . I remember sometime I couldn't take how bad it was I worried about my sanity even Im not sure about the spelling hehe I thought of death even in some moments but then another day comes and it feels fine so I just keep going with it. always wondered why me simple arabian girl in school suddenly blind what did i do but later i found out my aunt got it too same yr but she was 45 I was 16. Im still walking talking all my senses are fine but the balance is a disaster lol like a child but oh well
after my sight faded at the exam i thought my glasses must of caused me that I've never known MS but then I was diagnosed and I still finished all the rest of the exams with one eye but with steroids it recovered I studied 2 english courses in my home country and uni 5 yrs then i came to scotland i finished 2 courses at college and volunteered for 20 months still no job till my MS stressed me out now I can't manage i guess but I'm happy that i did something at least despite my illness plus i met my bf thats enough for me just dont give up I took interferron between 2006 and 2009 then i stopped all treatment till today unless if i got a relapse i take steroids my doctor intents i take treatment i don't want too
Iren Smith yeah lol, my balance is crazy. If I don't use my cane people probably see me and think I'm drunk. I've gotten better at not falling so much, learning to take it slow and to steady yourself on something. I think your doing great Iren, it's a hard thing for a young person to deal with so your doing a good job! Try out the MS connection website, I'm a member on there as looneybiz. It's a nice place to go if you need to get advice on how to deal with things.
I'm so sorry I have PPMS also
Me too. I just forgot how to post a reply.
Sorry you have the road to travel with me :(
@@johng.8626 don't be sorry. We're not alone. Now we know. Peace be with you my friend from a far. May u have pain free days when possible. Gentle hugs
Have RRMS.
I am awaiting an MRI now. I've had weak legs for two years now it's in my arms severe left sided headaches and weird left sided symptoms. Muscle spams twitches electric shocks. I also failed my neuro exam. I am 41 and had to stop teaching due to severe fatigue and have been to doctors for 3 years with no answers. Went to one of my old family doctors and he said I've got to send you to a neuro.
I hope it's not MS, but you are definitely having some symptoms related to it and that MRI will tell more. keep us informed and know that i'm hoping the best for you and you can be strong enough to handle anything with lots of faith.
John Gensamer thank u so very much and I'll let u know what I find out
Hi Amanda.Hope u are well and would like to know did you ever find out what was causing your symptoms?Thanks.
John you smock
+Florian Darocha Nah, I don't smoke or use illegal drugs.
You look 14 I thought I hope this kid doesn’t have cancer
Get on medication, try
+Olga Mesh ppms means you are screwed. There are no approved medical treatments for it
+Holly Riggle well, I was on Betaseron for 13 years; treatment that I would not recommend; now I am on Tysabri extended dose of 8 weeks its been 5 month-3 infusions; I feel so good! Hopefully, I will be free of visible symptoms in a couple of month.
Rrms or ppms?
+Holly Riggle I Have MS for 17 years and live live in Canada; if you are Ppms you don’t get any medication; I got new neurologist who transferred me from Ppms to Rrms and put me on Tysabri. Now for a week I been walking outside without even a cane despite, of crappy weather.
oh yes jehova will fix