I haven’t been really active on this lately! Since my last post I have had some changes to my MS journey. Firstly, I got my MRI to check for progression on my brain and spinal cord. Unfortunately results came back with multiple new lesions. It was very apparent Copaxone wasn’t an effective treatment for me. My neurologist explained my case had to go to a DMT panel (Northern Ireland) 5 drugs were chosen for me and I chose Tysabri via infusion. I am now going for my third infusion at the end of this month then I will go for infusions six weeks thereafter.
At my last infusion I informed the treatment nurse that I was experiencing numbness in my finger tips (only my right hand) then I told my MS nurse last week because numbness didn’t subside. She said it may be a case of mentioning it to my neurologist. I now have to go for a MRI?! Has anyone else had similar experience? Bear in mind my next MRI wasn’t scheduled until March 2026.
Thought I would respond and relay my own experience should it be informative:
When I had the first Ocrevus infusion in January 2025, I refused the premedication steroid, but I had an infusion reaction, where I felt queasy, tingling on scalp and mucus in my throat, they slowed down the speed of infusion. Next day woke up with burning inside my neck and increased numbness and paraesthesia in fingers/arm. Went to A&E, they seemed to think it wouldn’t require anything, after one week the numbness returned to its previous level. Since then, one brain lesion increased in size.
As with MS, each case is somewhat unique to the individual, so if you get an MRI it will at least provide an indication of whether there’s any correlation to your symptoms, if anything. Hope it goes alright for you.
I am very glad that you switched up to highly-effective treatment as soon as it became clear on the scans that your MS was up to no good, but before it took lumps out of you. That is an impressive save on the part of your MS team, and I am glad that they were so on the ball. My own experience of leaving it far too long to switch up tells me that they might have saved you a lot of grief and permanent damage by acting so fast.
I don’t have anything to offer on your question, but really hope that Tysabri does the trick for you as it has for me this past 15 years or so.
Thank you for your reply. Yes I agree now but I did feel gutted I may be going back to square one. However with sometime to think and many positive responses from people including yourself, my MS team have been very supportive. It’s better to know in the end no matter what the outcome is. Take care x
Hopefully just one of those things that happens and goes away on its own , I had a new symptom a few months into my tysabri treatment , mri showed no new lesions I was convinced it would, hopefully the same will happen to you
Hi, Just to add - I get numb finger tips quite often, usually in short bursts. I’ve always assumed it’s due to MS, not medication (and I’m not on Tysabri). But I can see why you’d be concerned if it’s new to you.
Thank you for taking time to share your experience. Your message has helped me greatly. I need to approach this issue with positive thoughts and hopefully the outcome will be good take care
Yes, unfortunately I do feel anxious when I have even the slightest change. Hopefully overtime I will become better equipped to deal with MS problems. Take care
take care