I really need some advice or ideas please.
My 18yr old daughter had a CIS 4 years ago, and for 2 years had lots of neuro symptoms (pins and needles, stumbling, tremor, etc etc) but no one used the words MS, thankfully - she gets v anxious about health. At Birmingham Chn’s Hosp she was told that she’d had an nitial CIS followed by a relapse… For the last 2 years the neuro symptoms faded away, but she is left with overwhelming fatigue, pain in all her joints/muscles, and problems with word retrieval. She has been investigated in the last month by a rheumatologist, who doesn’t think it is lupus or anything rheumatological at all… She has had endless MRIs, and the latest shows new areas of demyelination in her spine. Her paediatric neurologist referred her urgently to a new specialist last December but the letter didn’t get written, and when we found thisout at last we were told she’d get an appt in Oct/Nov… but she feels so ill that I felt we couldn’t wait any longer. I took her last week to a private specialist instead. I emailed him beforehand to say that she didn’t know what diagnosis might be under consideration, so that he wouldn’t blurt out MS and freak her out… but he didn’t read it (or her notes, or her MRI findings…sigh…) He took a history, and said that the optic neuritis she had 2 yrs ago didn’t sound like ON to him (though it had been diagnosed in an Eye Hospital) and that as her VEP tests came back normal, AND as joint/muscle pain isn’t part of MS, AND as the areas of demyelination are small, he doesn’t think she has it, but that she has an 80% chance of developing it in the future.
So - new areas of demyelination sound to me like MS… am I right about that? I was also told by the eye hosp that VEP aren’t always 100% accurate as a way of diagnosing MS, particularly with a new and brief ON episode…
He didn’t know what to make of the joint pain at all… IS joint pain part of MS?
We are still in limbo, with the additional problem that my daughter is now so incredibly distressed as he has told her in effect that she will probably get MS in the future, plus she has something wrong with her now that is making life so difficult for her (the fatigue and the joint pain). I don’t know what to do or what to think. He wants to see her soon in his MS clinic (only because that is the fastest way to get to see him again, apparently - he did stress to her that’s the only reason, as he realised he’d said the wrong thing in mentioning MS at all…) but I don’t really have much confidence in him.
So - what should I do, and who should I try to get her to see who might help her?
Any suggestions gratefully received. Thank you!