Time to push for diagnosis?


Im a 40yr Male In “limbo land”. Apologies in advance for the long post.

Around 10 years ago I had Optic Neuritis. I was otherwise healthy apart from I had a well established issue with fatigue and a particularly bad response to colds (aching bones and muscles ect). The fatigue ect was put down to an after effect of “Glandular Fever” that I was hospitalised for while at Uni.

After the Nurits I was given an MRI which came back with showing several scars on my brain and evoked potentials that where borderline but did identify disparity in cogantive ability that was was consistent with MS. The Nurologist I saw advised me that I didnt need a lumber puncture because I he had all the information he needed at this point. He advised me that as my other symptoms where mild there was little benefit in a formal diagnosis as there was no preventative treatment. Conversely a formal diagnosis may effect pratcical things like health insurance, getting a mortgage etc. I accepted this logic and moved to limbo land for the last 10 years

Over the last 10 years I have been very active, I have taken up running and sorted my diet out (I completed 2 marathons and run 15-20miles per week). The backgound symptoms I have experienced have varied in severity but recently the fatigue has become a little overwhelming and the pain in my hands and arms has become more regular and intensified. I have also found that recovery from previously minor injuries is taking

In all honesty I can probably live with it at the moment I was just wondering if a) prevention had moved on and early intervention was beneficial or b) Im of any use in terms of trials etc

Thanks for reading


hi david

i was diagnosed in 2008 and put straight on to copaxone.

since then i have been switched to tecfidera.

the latest theory is to get onto a DMD asap.

are you going to demand what you are entitled to.

good luck

carole x

1 Like

Prevention has moved on in the past 20 years, no question. I had pretty aggressive RRMS from dx in 1999, and the progressively stronger DMDs I have been on since 2000 mean, I am sure, that I am in much better shape than I would have been without them. Your history is very different, and it is great that you have made the most of your good fortune in having fairly mild MS. But nothing stays the same forever, and I think you are right to be now reconsidering your approach to dx and potential protective medication so that you stay as fit and well as possible. Alison