Hi everyone im Ian from Leicester. I was diagnosed with multiple sclerosis over 10 years ago, and i now make videos on positive ways to live with ms right here on youtube ever other Wednesday.
If you are new here be sure to subscribe so you don't miss any of the juicy stuff. ru-vid.com
Some of the topics I cover are: Tecfidera, the side effects like flushing and general tips to improve these. MS Symptoms, like early symptoms or ones i am currently suffering with like memory or hands. MS Exercise, mental and physical exercise to improve the body and the mind. General Multiple Sclerosis topics that may come up from time to time.
I agree bud, it's easy to talk to others with life long illnesses or invisible illnesses! Also for ppl that live with someone are great to talk to. They too struggle with it.. seeing their loved one suffer problems and issues and not being able to do much. If you need a chat about illnesses I. Here for you
I have numbness on my face and scalp and painful burn to the touch other days... could i ask you where your lesions are? Also keep up the good attitude😊
@MyMSstory no worries thanks for the quick reply! If you have time I'd love to know when you get the results. I'm having trouble with insurance approving my spinal mris I think I'm going to have to completely numb and possibly lose all hand function before they do 🤪
I have been on Tecfidera since January 2020. MS backtracked to 21 years ago. The side effects (flush, nausea) still happen after I eat fried foods, foods high in sugar or salt. No chips for me unless I want to feel brain fog and barely move my legs the next day. Same goes for overly processed sugars and grains. Summer heat can cause itchy rashes as well. Basically if I lead a healthy life style, I forget that i have MS and try climbing mountains. Diet is 1000% responsible for how I feel the next day. I was thinking the other day that this MS seems should be called ultimate food allergy. It keeps me safe though, I avoid all the evils of the world to keep myself safe. Right now actively limiting soy and gluten. No alcohol, no smoking, no drugs. Drank a bit too much for about 4 months after my dad passed away and ended up with the worst flare up I've had so far, scared me so bad, i don't even look at alcohol anymore. I feel much better on healthy plant based diet with lots of soups. Absolutely have to stay skinny otherwise my bladder gives me trouble, the more weight I gain the shorter my time between toiled runs. I try to do small workouts throughout the day. Sleep and water, warm foot baths in winter, ice packs in summer. And monitoring my stress. It's a huge challenge coz Im a kindergarten teacher, a Ukrainian living in a foreign country but hey, nobody has it easy. But I'm almost 40 now and my physical stats are pretty average. I wish I could continue to work in a kindergarten but I don't have the energy anymore so I'm switching to a job in a more peaceful area with more sitting. Not sure if it's MS, the approaching 40s, or both. Thanks God, so far so good but i'm grateful for every moment coz I remember how fast these flare ups can happen. And how much they suck. I had about 6 big ones, 3 of them happened in the past 7 years. Maybe I had more before but I was always on the athletic side, so I might have not noticed. It's like one day I have to use a wheel chair, the next Im doing yoga in my hospital room. I'd say the frequency is the same as before Tecfidera. The last flare up was very mild (On Tecfidera) and my overall health has improved. It increased my anxiety though, so I had to start taking valium before sleep. You have to find a good doctor but still be critical of all the advice you read and hear. A diary is a must. Watch your body and mind, for me these are my top priority coz I want them to last into my 70s. Hope this helps somebody.
Thanks for this video! Hope you’re doing well. My mom is struggling with a sudden sore throat 3 days after starting Tecfidera. Do you have any tips that can help her?
I keep getting this happen, especially when I have a lot of inflammation issues going on. Im not currently diagnosed with MS but my symptoms are pointing that way. Because I have Chronic Fatigue Syndrome my GP tends to put any new symptoms down to deconditioning. Recently I was telling her about bizarre sensations of shaking but inside my legs. It felt like I was laying on a vibration plate. It tends to happen around late evening and is rather off putting and annoying. She put it down to deconditioning. I told about the fact that when I walk with my walking stick (as I tend to have little falls and stumbles) the floor feels like jelly. Its like I cant quite tell where my feet are as I think ive moved my foot quite far forward only to find that id taken a tiny step which will cause me to almost stumble. When this happens I kind of look like a toddler trying to walk. Lol. But now we have the head ache thing as well, eye pain when moving my eyes, light sensitivity. My vision can be fine one day but is blurry the next, had this checked by an opthalmologist and there is no reason for it. My Mum also had a lot of these symptoms and she was diagnosed with M.S. I just just dont quite know what to do. I have an appointment for a Neurologist but its in 9 months time! Do I go back to my GP and make more noise about all this? The symptoms are getting worse. Im already bedbound and it really disappoints me that they are so quick to put everything down to Chronic fatigue. Sorry this is so long by the way!
I had that for few weeks in 2012 I think. It was probably my first symptom, but I was diagnosed in late 2015 after having an attack into my foot and hand. Back then, the lhermitte was mistaken for blocked nerve in my spine.
not diagnosed with MS but my heat intolerance symptoms have brought me here, fatigue, cognition, vision, like a switch, instantaneous if I don't stop soon enough..
I'm 66. Been diagnosed for 23 years. My hands annoy me. Lots of tremors and numbness. I flex them a lot as if they've gone to sleep. I keep using them as if nothing is wrong. I notice the deficits, but refuse to say I can't do it anymore. It's mind over matter, in my opinion.😅
I had lost my job... My husband betrayed our family (wrong choice however, I made the decision to stay with him) We have a Son with Autism also, and my husband's elderly Mother lived with us (he was rude and cruel with his words towards her and our son) Not surprising that, my Doctor kept telling me at the time I needed to do something about my stress and that I would not like the outcome... So! you could say, stupidity on my part from... Extreme stress!
Dr. Alan Macdonald in Florida, did autopsies on 10 MS patients and found filarial worms in all of their cerebral spinal fluid. A great RU-vid channel for MS is Live Disease Free. .
Every ms video the narrator is seated. I look good too that way. Let's see walking too! I am guessing that wouldn't be so good. Neither would my performance.
From what I gather….a similar story is found in these comments. What is known as Glandular Fever/Mononucleosis in the U.S was responsible for my MS. At age 12, I got sick with it and was bed ridden for 9 months, then 3 months the next year, and a subsequent 2 week infection the third bout at age 14. Started having night paralysis and out of body experiences. Still get them but it was mad in my teens. Then completely different symptoms in my 20’s; extreme muscle spasms that only morphine could touch. Only diagnosed at age 51, 2 1/2 years ago after chasing doctors and getting snide comments. I really hate them after what I’ve been through and I’ve never been more disrespected on more occasions than in a doctors office.
Thanks for the video. Invisible symptoms are a daily struggle. Bed ridden some days to barely getting by. This has been my experience since diagnosis a couple of years ago at age 52. I’ve been naive to a certain degree on purpose. I have tried to not read too much as I have found a wide variety of symptoms and I haven’t wanted to predispose my addled mind with more than is necessary. Just when you need a better understanding, I have felt incapable of digesting big lots of info. That’s true of everything else also so it is not purely subject matter. Having said that, I have been frank with my doc about my symptoms . They have been rarely acknowledged, if only to explain away. It gives me pause as my symptoms seem to be so atypical, I have often wondered if I may have been misdiagnosed?Then I watch a video, like yourselves and I don’t feel so alone. Seems talking about what you experience with this disease is not anything the doctors care to hear about, or they have some bias confirmation fear that will encourage the patient. Head scratching. Again, this has been my last neuro experience. I don’t know how common/uncommon of experience. It’s just somewhat comforting to be acknowledged and educated about the why? of it. My first neuro wasn’t near as bad as my current one. Weird disease and certainly makes folks uncomfortable; you would think that doctors are a good a bouncing board to have an open conversation. I would love feedback in this regard from fellow folks with MS. Man….did you hit the nail on the head as to how illness is perceived”. It is so frustrating to be reminded of “how good you look” -like I wasn’t ill at all. They didn’t see what I saw in the mirror this morning, that is, if I could dare look and bare it. I have often just said “thank you”……then privately thinking “ So glad I can make this easier for you to bare”…..snidely to oneself. Yeah, it makes one a bit bitter.
Thanks for this. I just started Bafiertam, and there isn’t any info online about it, but since it’s a newer form of fumarate, this is still helpful. I chose a fumarate because it seems like the healthiest option of all the DMDs. I started this med 4 days ago, and had flushing intensely with the first pill, less intensely with each dose. No real GI side effects so far. A tiny bit of cramping with the first flushing.
I developed an autoimmune disorder in 2020 (Hashimoto) I’m pretty sure that I’ve developed a co-occurring autoimmune condition -likely MS but have not gotten diagnosed. I’m having a lot of difficulties with basic day to day functioning. I plan to see a neurologist soon. I now realize these autoimmune diseases go undiagnosed for many years due to lack of knowledge and understanding.
I have to eat something along the lines of oatmeal with my morning dose, but at night I take it right before bedtime with no food. Sometimes I wake up with a flush happening, but normally I sleep through it. My stomach issues are unpredictable, sometimes I get them, sometimes I don't. Thanks for the video!
Best wishes! My husband's been on Ocrevus for years and it's not helping him at all. Just literally found out about Ponvory like 2 minutes ago and found you-so we'll be asking his neuro about his thoughts. Thanks for the vid!
@@MyMSstory I have a lot of flush now and then. My skin itches, legs, back arms now and then. So I guess I'm not well on in and outside. The flushes often comes around lunch. Not fun on a big workplace and Teams, meetings etcetera. I'm really low at the moment. Have discussed Tec with my doctor but that's a couple of months ago. Your videos makes me glad I'm not alone anyway. Thanks.
hows tecfidera? I've had three doses of lemtrada in the uk and they won't give me nay more. I've had another relapse so choosing between tecfidera, ponvory, kesimpta or ocrevus. Not sure which to opt for
Hi! I've just discovered your chanel. I was looking information about hands symptoms and MS because I suspect I have this. It's been difficult. Doctors don't believing me etc. I feel weakness in all my body. And hands! It's confusing because I have Scleroderma limited, but this seems not to be caused by the Scleroderma. I have more neuro symptoms. (And bone pain) Thanks for your videos where you talk about the hands. It's very helpful. Warm regards! From Mexico .
