Reaching out to anyone who has been diagnosed with Solitary sclerosis. Very interested in your journey. I currently find myself on the same path and struggling to find any information about this rare type of MS!
I’d love to hear from you
Well, back at the start, after my first relapse, and in response to me asking whether I had multiple sclerosis, the neurologist said by definition no, and that there was no such thing as single sclerosis, so best I went home and got on with life. I think we both had a good idea that it wouldn’t stay single for long, and it didn’t, but that’s another story.
Alison thank you for your reply!
I’m desperately trying to connect with anyone who has heard of Ss even better if they have it. Seems like even MS nurses haven’t heard of it.
I want to know what im fighting. Please tell me more Bout your journey if you feel comfortable. Happy to private message also.
Hope you are as well as can be.
Apologies for the delay! Id given up!
I think they call it Clinically Isolated Syndrome (CIS) these days. If you search on that, you might have more luck.
My previous diagnosis was CIS
Its been 3 years progressivly getting worse. My consultant diagnosed progressive solitary sclerosis. Its rare. But its like PPMS. Officially not MS. So no support or community for it. But my whole right side continues to deteriorate. CiS is supposed to bounce back after a few months. Im heading into year 4 and theres no stopping it.
Just hoping to find others with the same diagnosis.
Thanks for your reply anyway!!
I was diagnosed with CIS, it never bounced back and after 9 years, and additional symptoms prompting more spinal MRI’s I was diagnosed with multiple sclerosis.
Sorry - I misunderstood your question.