Hi I am 35 and recently diagnosed with MS from an incidental finding on an MRI a year ago. One year later I have had some symptoms which I know realise are related to MS. Tingling and weird sensations on my left arm. My MRI shows new lesions in the brain that are active and I’m seeing the neurologist in a few weeks to discuss treatment. It’s all a shock and I am wondering if anyone has had similar experiences and how it will progress? Thanks
Hi I had tinging in my right arm at first then it went numb before I had MRI then they found white spots in my brain
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Hi star. I had various strange tingling on my right arm which I didn’t think that much about - just thought they were strange! Then some 7 months later I had optic neuritis and was sent for an MRI of my head the outcome of which was an MS diagnosis and treatment with weekly injections of Avonex. That was approx 17 years ago. I will soon be 70 and although it’s my right leg that has been affected I can still walk for 15 mins or so and by and large my right arm is fine.
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Hi thank you for your response: did the MS affect your ability to walk quick or was it a gradual thing? Thanks
Hi Holly,
Are you undergoing treatment at the moment. Just wondering how these things progress. Very worried. Sigh
Hi Star. For a good few years ( maybe 4) after diagnosis my walking wasnt affected at all - until one day after walking around town for something like an hour and a half i suddenly found my right leg wasn’t moving properly. It recovered after 30 mins or so of resting (during which time I was getting my eyes tested) after which I carried on pretty much as normal. Over the following years the time I could walk for has slowly decreased but dropped a fair bit after I had quite bad Covid (during which I couldn’t move my right leg! That was scary). I think it is now relatively stable - back to decreasing slowly.
In my own experience, the best way to protect yourself from loss of mobility et cetera is to get on an effective disease modifying treatment as quickly as possible and then be quick to upgrade that treatment if and when you need to.
Once serious damage is done, it’s done and there’s no getting that toothpaste back in the tube, so the trick is to stay one step ahead. Sad experience speaking here, I’m afraid. (I have had aggressive MS for 20+ years and most of my permanent disability came in the couple of years between my first-line DMT losing effectiveness and changing up to something stronger).
The best of the treatments these days really are very effective. I’ve just enjoyed a peaceful and relapse-free decade, as an example.
Thank you for your response. I’m 35 and have just been advised to start Ocrevus. I’ve had 2 flares which are just tingling in my left arm. Hoping this will curb things
Hi Alison , thank you for your response. I’m 35 and been advised to start Ocrevus. Hoping that will curb things
That’s great news. Good for you.
Well all the best and hope all goes well for you- Ocrevus is supposed to be pretty effective