Relapses without lesions

Everyday living
1

Hello everyone. Just wondering if there is anyone else out there with similar MS to me who could advise or share experience?

I was diagnosed with relapsing remitting MS in 2014. I had my 1st relapse in 2015 and have had 5 more since. Symptoms are mainly overwhelming fatigue, head pain, trembling, and occasional spasms, usually wiping me out for 4-6 weeks. I’ve got some residual left sided weakness, but my cognitive abilities have reduced enormously over the last 4 years. When I’m “well” I can only work 3 hours per day despite using CBT/fatigue management strategies.

The thing I’m struggling to understand is that despite numerous MRI scans, no new lesions have been confirmed since my diagnosis in 2014. My consultant started me on Copaxone last year, but relapse frequency is increasing now.

I’ve been told on numerous occasions I’m an “interesting case”. I’d rather not be. I’ve been told that my relapses/pseudo-relapses are primarily reoccurrence of old symptoms and/or background MS activity (whatever that is).

I’m at a loss to know which way to turn now. I’ll have to completely give up work soon if relapses/general decline continue as present.

Any advice, experience, thoughts welcome!

Jon

2

Well Jon, As a ‘special case;’ what if you have not got MS but something that mimics it’s symptoms like https://www.aps-support.org.uk/ George

3

Thanks George.

I’ve had multiple tests for all sorts of other things over the last 5 years but nothing found. My MS meets MacDonald criteria (but only just), despite 3 negative lumbar punctures. I’ve been under the care of the National hospital in London, and had a 2nd opinion from Royal Free London. Both concluded MS despite unusual presentation.

Jon