Does anyone here have MS ?

[yao]

There was a post on this a while ago and quite a few people commented. I'm posting on AIBU due to higher traffic.

Just wondering if anyone has MS and how bad it is at the moment ?

And whether you made changes to your life when it was / is milder in the beginning or whether you just carried on as normal ?

It seems so unpredictable.

Fort the first 30 years or so i just carried on as normal. I now need to do more stretching type exercises or i seize up and wobble a lot. My MS hadn't really progressed until i hit my early 60's

Ifbi haf my time again i would do more pilates, yoga and swimming.

I’m 44, was diagnosed with MS 8 years ago. I kinda carry on as normal, but i definitely see a decline on my cognitive functions and energy levels. I’m on Tysabri about 9 months.

Do you think stress impacts it ?

I wasn't aware there are different types of MS. Some people lead a relatively normal life by my husband, who has recently been diagnosed with the primary progressive type, and his mobility is going downhill fast.

My daughter was diagnosed earlier this year at 17, just before her A levels. She's on Kesimpta. So far so good, but definitely gets fatigued and her right hand (which went numb just before diagnosis) has not recovered 100%. She's arty and a writer too, s this is impactful. We are hoping that there will be better and better treatment so she will live a relatively normal life.

Yes, I was diagnosed in 2005 and now I'm 42 I can no longer walk unaided (now use a rollator or an electric mobility scooter), drive a car or work in an office.
Having MS became much more impactful for me almost 4years ago, and that's when all the really significant deteriorations took place.

Can I ask anyone on here who doesn't mind sharing what symptoms you had which prompted you to get a diagnosis?

Me! I was diagnosed around 2018 shortly after I had sensory symptoms, then opted with one of the very high efficacy treatment options at the time, alemtuzumab, first line.

Alemtuzumab is a bit more restricted now I think because of side effects.

Living a completely normal life, demanding job I love, had a baby last year and work part time by choice for childcare reasons- no clinical or radiological relapses in that time, and my consultant thinks prognosis, though always unpredictable, is promising. Life is not predictable for anyone.

At the time of diagnosis, I thought my life was ending. I feel lucky that MS treatment has been one of the massive changes in medicine over recent years.

There's some really promising research going on:

-https://multiple-sclerosis-research.org/ive-just-been-diagnosed/
-https://msselfie.co.uk

Hi, I have relapsing remitting. I went from 1st onset to diagnosis in 6 weeks. Symptoms were initially diagnosed as Labyrinthitis (inner ear problem), (no sense of balance, dizziness, vomiting). When symptoms didn’t improve, GP arranged for ambulance but they just weren’t keen on taking me/talked me out of going. I then had marginal improvement for about 10 days so thought “the bug” was clearing but then had stroke like symptoms and was admitted. After MRI and lumbar, I was diagnosed.
I think this was very unusual presentation.
if there’s anything else you want to ask, go ahead I’ll answer where I can.

I'm worried about a series of symptoms that could be nothing more than coincidence. Could potentially also be post cancer / hysterectomy stuff but I'm concerned but haven't yet discussed with anyone medical.
Symptoms being
One sided weakness - shoulder, wrist, hip knee and ankle on one side are all noticeably weaker and more painful than the other side. Getting increasing amounts of cramping in all leg muscles in that leg. No longer able to walk normally downstairs as if I bend that knee I feel like I will fall.
Chronically bad fatigue feel like I can never get enough rest. Can't remember the last time I woke up feeling refreshed. Sleep minimum of 2hrs in the day. Brain fog in the mornings
Dizziness if I bend over most days and sometimes when I sit up.
Bladder issues and chronic UTIs.
Sharp sensation's all over body feeling like I'm being bitten.

I'm probably being silly and overthinking things. I'm also very overweight so I think all my symptoms will be put down to that

I was diagnosed in 2020 (which very much added to the lockdown fun!) I had two bouts of optic neuritis in two years, so was put on Tecfedira. No relapses since then, touch lots of wood.

Life is unpredictable for everyone. That said, it is worrying and scary. I focus on what I can control: a healthy (ish) diet, keeping my BMI in the normal range, and getting plenty of exercise. I feel like it can't do any harm!

I am very lucky in that, most days, I don't even think about having MS. However, I'm aware it's early days for me, so I'm trying to make the most of my mobility while I can.

I have MS, diagnosed 11 years ago, after an acute inflammatory attack. Dx with Relapsing Remitting type, now Neuro thinks I am in Secondary Progressive stage. Mobility is definitely worse than at dx. Fatigue is another of my symptoms. As is brain fog, pins and needles, numbness, spasm, pain, tmj, weakness, eye problems etc. The first 6mths after dx were the hardest for me, to accept I had MS. Never dreamed this would happen to me.

I am a very positive and live in the here and now, I don’t plan ahead, just take each day as it comes and accept that any plans I have made might not be possible. I try not to focus on my symptoms and just get on with life, I never moan about it, because what’s the point, this is my life I won’t let MS take everything away from me. Unless I can go out on good days with a smile on my face, I stay at home. I am still a wife & mum. My DS’ were quite young when I was dx with MS.

My DH has been brilliant, helps me so much every day, does all the cooking, makes me breakfast lunch and dinner, in between running his business.

Stress definitely has an impact for me. Also I try to avoid colds, as Neurologist says a cold may trigger a relapse. Which I think could be right, I had a very bad cold before my first set of symptoms started.

I have had it 20 years. A GP gave me some really good advice. The people who do the best are those that live your life as if you don't have it. It's really helped me stay positive and has given me real impetus to keep going. My advice is stay working as long as possible. It really keeps things going.

I saw a neurologist this week for possible MS. A lot of similar symptoms and ongoing for a couple of years

He thinks it's Functional Neurological Disorder ( never heard of it!) as it displays a lot of the same symptoms as MS but without damage to the brain

I still need an MRI to rule out MS but it may be that you have something like this too