So after a severe bout of optic neuritis (eye sight pretty much gone in one eye) it was dealt with steroids and I had a MRI scan. The MRI scan showed several lesions and the neurologist (not an MS specialist) eluded to the fact he thought it was MS given that the lesions clearly did not all occur at the same time and then referred me to an MS specialist. The specialist diagnosed CIS, talked me through all the DMTs that are available but then said I would be eligible for them only if there is evidence of another lesion on the MRI. A lumbar puncture would likely be very difficult as apparently I have limited fluid on my spine (a joyful discovery as I was about to have a c section last year). The plan is to have another MRI in 6 weeks, then 6 months then a year. My family are delighted I don’t need DMTs although I am a bit more reluctant to be quite so relieved.
I don’t have much to complain about in relative terms and I know I am lucky in that I have never had any mobility based symptoms but there are several things which could have been MS related over the years but that could also be many other things (cramps in legs, horrific fatigue which prompted a GP visit on a couple of occasions and sometimes I swear I have brain fog where my thoughts and my mouth are totally disconnected). I think I’m just a bit worried about the future. It definitely seems that some neurologists are keen to give more people treatment earlier, while others are of the opinion you need two clinical episodes. I am happy to go with the specialist, he is the expert but is it just a case of the NHS and lack of funding? I know nobody wants to take medication if it can be avoided, I suppose I just worry what is going on in my head that I am not aware of, or that I question.
Any thoughts would be much appreciated, I have good support but I do feel quite lonely on this.