Hello all, I posted way back in 2021 when I had a whole host of tests to try and explain some neurological issues I was having. With the amount of time it was taking I decided to go privately and got my answer, well, I say answer but it was just ‘we can’t explain the lesions or symptoms’. So I carried on, reassured by what this fancy private doctor had said to me. The symptoms have come and gone and some have gotten much worse, so I went back to my GP who sent me for another MRI and this time the amount of lesions has more than doubled from what they were before. I had a call on Friday 13th of all days from the consultant neurologist I’d seen in 21 and he advised me that they’d like to do another lumbar puncture, had this done yesterday and after carrying out the procedure he sat down to have a word with me about it all, trying to piece it together I suppose. He said that the amount of new lesions along with the symptoms I’m experiencing and have been experiencing for quite some time now, it’s highly likely that I have MS. I now have an appointment with a specialist in MS and the MS nurse for my local area, hopefully after my wedding which is less than a month away, good timing right?! So I think in my head I know what’s going to be said at my next appointment and I’m ok with that, at least I will have an answer. With it coming and going the neuro said RRMS would be his best guess at this stage but he’s unsure if the specialist will suggest a ‘wait and watch’ approach starting treatment at my next flair up of symptoms or start treatment now. My questions are, if I’m told it is 100% MS , do I have the right to be started on treatment right away, to avoid more worsening symptoms? I don’t really want to ‘wait and watch’ and also, what sort of questions should I be asking at my next appointment please? Thanks for reading
I would not be happy with the “wait and Watch” They have already said the amount of lesions have doubled.
Was your LP before negative?
There’s the catch, as I got it done privately they only apparently checked for ‘O’ bands and according to the nhs neuro they should have checked for a lot more than just these. The quality of the scans was also very poor so it’s been a lesson learned for me
I wouldn’t be happy either - far from it. Quite honestly, I would be very surprised if that was what they recommended. If they did, I would want a second opinon.
It’s terrible timing, but then it’s not like there’s a great time to get rotten news (if that is what the news turns out to be).
I know there’s a bit of grumbling going on about scan quality and whatnot, and there might be some more messing about to be done before you get clarity about what it going on,but it does sound as if you are well on the way to finding out for sure what ails. Hang on in there.
The wait and watch approach seems utterly pointless to me and not likely to end well.
This is from the professor of neurology at Barts.
"It is clear that pwMS who are treated with more effective DMTs first-line do so much better than those who are asked to wait (watchful waiting) or are escalated gradually up the DMT ladder (slow escalation).
Case study: does treating MS early improve survival? (substack.com)
Thank you ever so much to all of you that have replied so far. Hopefully the specialist doesn’t choose the wait and watch route and if he does I will be objecting it and seeking a second opinion/treatment from another neurologist.
I believe from what i was told, it depends on how many relapses you have had over the last few years. If the amount of lesions have increased, I would think its
likely they would start you on DMT.