I got summoned to my neurologist this morning to be told I have MS. Not sure it’s sunk in yet even though I was expecting it.
A brief summary of the last 2 years: I got diagnosed with CIS (clinically isolated syndrome) in December 2010 with a spinal cord lesion. This was following by a lumbar puncture where they did find the oligloclonal banding. I have had two relapses, one last year that wasn’t too bad and a really bad one February/March this year which was treated with high dose cotisteriods. I never want to take steriods ever again, they really didn’t agree with me. This was followed by my 10th MRI with and without contrast. We’re then on to today.
Basically I now have brain and spinal lesions and optical neuritis so my neurologist is refering me to an MS Clinic in Birmingham to begin DMDs (disease modifying drugs) maybe daily injections, maybe slow release, maybe tablets, he didn’t know. In one sense actually having a conclusive diagnosis means I can have proper treatment however to hear the words this morning knocked me for six! I couldn’t think of any questions to ask- at all!
I have no idea what the next step is, what DMDs are, what DMDs do… so I was hoping to pick your brains, what worked for you? If you had to advise me of a treatment route what would you suggest and why? Has anyone had any luck with any alternate therapies? Any suggested MS reading?
Basically a bit confused.