Difficult to understand MS!

Hi, just a quick post as I seem to lose some of my posts! I was just wondering if people find it difficult to understand MS and admit that they have it, you know? I was diagnosed with CIS in 2016 and had a LP with positive oligoclonal bands. Now I have had another MRI scan which shows a new lesion, and am waiting for the results of a LP which was done on Thursday and for which the consultant wants the analysis to include neurofilaments. I have an MS nurse. So am I waiting for final confirmation of diagnosis and treatment? Off course I went through the process of the LP on an extremely hot day in London and had to use the tube and train, and then I find out that the consultant is away for August!

Sorry if I am rambling!


Hello Sarah

I’ve noticed a couple of your posts today. I think normally you might have had a message from the forum admin or moderators, but as it’s the weekend they’ve perhaps not realised.

What sometimes happens for a new user of the forum is that posts are held up pending admin approval.

MS is a bugger of a thing to understand so it’s normal to be confused as hell about it.

I suspect from what you’ve said (apart from the neurofilaments post, about which I think Anthony gave the perfect answer) that

a) you didn’t need the second lumbar puncture and I’m bemused as to why you had to have it, unless the neurologist wanted to check something out that wasn’t MS, (aha, neurofilaments!) and

b) that if you are positive for O bands and have a CIS diagnosis, plus a new lesion that an MS diagnosis might be heading your way.

But, I am not a medical professional, I know nothing about your symptoms, relapses, situation, etc. So, while what you’ve said sounds like X to me, your neurologist may think Y.

Have you spoken to your MS nurse about the new LP? And the possibility of diagnosis? If not, maybe that’s your next port of call.

Meanwhile, feel free to post your thoughts, worries, questions, on here. We will do our best to help.


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Thanks Sue you have been very helpful and I will be contributing to the forum ! I have the telephone number of the secretary to the consultant and the MS nurse is always very helpful, although I think she is very busy with lots of patients so she can’t always get back to me right away.