Q - finger tingles


My first post :wink:

I woke up a few months ago and couldn’t feel the right side of my body. Over the course of 2 weeks I was told it was nothing, then treated for a stroke, then suspected MS (given steroids), and now diagnosed MS. 5 delightful brain legions. I’d never heard of MS before and have been drip feeding myself information so as not to get overwhelmed. Hopefully going to start Ocrevus soon - by the time I begin treatment it will be just over 3 months since that first MRI. I have two questions (and a fear I suppose)… will they give me another MRI right before the infusion? I ask because, when it first started all the symptoms (numbness, tingling, loss of balance and control of my arm) where all on the right side of my body. About a month after coming out of hospital I started (and continue to have) tingling and loss of sensation in the tips of my left hand fingers. Is it the same part of the brain that controls both left and right hand nerves? i.e. is this something to be expected from the lesions they found, or would this be the result of a new lesion? The fear is, that I start treatment based on the first MRI and when they do another one in 6 months or a year it shows up something new and it’s assumed the treatment isn’t working (when in fact it was a new legion that appeared between the first MRI and the treatment).

Maybe this is crazy talk - ha! - but I can’t seem to find an easy answer on the tinternet, and despite mentioning to the ‘MS team’ on the phone (the whole aftercare experience has obviously been conducted via phone given COVID) I’m still not clear on the answer.

Any thoughts appreciated - thanks! Sarah

Hi Sarah

Am still waiting for my MRI but in the interim of waiting from GP visit to be seen by Neuro I have been reading like a mofo! :slight_smile: My understanding is that sometimes MRI lesion area can point to symptoms (eg cerebellum and balance) but other times it doesn’t and its just nerve dysfunction and how it misfires per se.

Also i think number of lesions doesnt correlate either - eg someone with 3 can have worse symptoms or MS presentation with someone who has 10. This does seem a bit counterintuitive but have seen this consistently noted

I dont recall seeing anything about pre infusion MRIs being done as whether there are new lesions to be checked or not so sorry i cant answer. I would anticipate it is the relapse progress/situation in relation to symptoms and function that might be driver for any change in medication and that they would be more sophisticated than just lesion counting, if that makes sense.

So given DMT is to reduce relapse it may be the relapse/new symptoms is how they will measure efficacy and any need to change. There is some guidance on what constitutes a relapse which is new symptoms, a month apart that last more than 24 hours (or some such thing). So maybe you should ask MS Team if the move to the other side of the body is just on a spectrum of same symptoms (and therefore no real change) or if they consider it a relapse- though by what i have seen it doesn’t seem to be but as i say, desktop reading knowledge only !

Hello Sarah

I can’t help with questions about precisely where lesions are and their effect on left & right sides.

But, the point of a DMD is to reduce the number and severity of MS relapses. So the fact that you may be having another relapse prior to starting Ocrevus is just adding to the need for a decent DMD.

As far as I know, the age of lesions is clear from MRI scans. So historic lesions from before Ocrevus would be seen as such.

Don’t focus your worry on things that you basically cannot affect. I can see why it’s happening - a diagnosis of MS is hard to come to terms with. And a drug like Ocrevus isn’t something you would just deal with as if it’s nothing. It’s not. But your brain tries to distract you with these questions so you don’t have to focus on the real life today.

You’ve had a tough few months. Covid has added to the trouble. I really feel for those of you who’ve had to deal with new MS symptoms and/or diagnosis during the last 6 months. It’s hard enough when you are face to face with neurologists, MS nurses, other professionals. Doubly so when it’s all done from a distance.

Best of luck to you with the infusions, and also to EML, you too have had a very steep learning curve with no end clearly in sight.


Thanks Sue Waiting for MRI of brain and spine and now also EEG due to being told also i have focal epilepsy… Just watching news and covid rise not making me hopeful things will progress…

Hi Sarah,

Sorry to hear of your diagnosis and the fact that it’s all happened so fast for you. I’m not too sure about the answer re your mri but I’m sure it must be fairly common for patients to develop new symptoms between diagnosis and treatment as these things do seem to take a bit of time to get started. So they must be used to the situation you’re in and know how to act accordingly.
Im sure you’ve already been told but ocrevus is a top level drug so even if worst came to worst and they thought it wasn’t working well due to the mri showing something new, there isn’t really a stronger option to switch to anyway so I doubt it would alter the treatment approach if that makes sense.

Is there a reason they have gone straight for ocrevus with you? X

Thank you all so much for responding! Reading my post back, all I can see is anxiety and a desperate longing for there to be some logical connection between the damage they can see and the symptoms… which I know is ridiculous! :wink: I gotta chill out - ha! Appreciate your insights though - I hope you get your scans EML and thank you for the sympathy Sue. My sisters name is Charl and she was born in 84 - so that’s a bit spooky :wink: I suppose, as somebody said - it’s just a steep learning curve. All the amazing people who recorded videos on this website (to help us newbies) seem so wise and rested. Give it a bit of time and I’ll get there. Thanks again, Sarah x