Holmes tremor; looking for fellow compatriots!
October 9, 2015 12:20 PM Subscribe
I have relapsing-remitting multiple sclerosis. I am 35, and I have developed a very specific, very rare type of tremor.
Any research I attempt to do or any attempt I make at finding other people who suffer from the same condition and are not old and decrepit is futile.
All of the search results are medical journals. I cannot find anything where people talk about their experiences. So far, my neurologist has tried two different medications. The tremors did not respond to either.
The tremors are extremely aggravating, since they are a postural, passive, and intentional type of tremor all at once. It is a very rare, and not well documented condition.
If you know anymore than I do, and are able to share in the experience – please do.
Any research I attempt to do or any attempt I make at finding other people who suffer from the same condition and are not old and decrepit is futile.
All of the search results are medical journals. I cannot find anything where people talk about their experiences. So far, my neurologist has tried two different medications. The tremors did not respond to either.
The tremors are extremely aggravating, since they are a postural, passive, and intentional type of tremor all at once. It is a very rare, and not well documented condition.
If you know anymore than I do, and are able to share in the experience – please do.
Have you asked your neurologist if he or she could connect you with someone else who might have an experience similar to yours? It's not unusual for doctors to make these kinds of connections among their patients (with the consent of both parties, of course), especially when it would help with the kind of day-to-day coping skills that are not often in the wheelhouse of an MD. If you're treated at a large center your doctor might even be willing or able to confer with their colleagues to cast the net a bit wider.
posted by telegraph at 1:02 PM on October 9, 2015
posted by telegraph at 1:02 PM on October 9, 2015
The UK MS Society has a website with a forum. They might know of someone or somewhere.
posted by kadia_a at 2:05 PM on October 9, 2015
posted by kadia_a at 2:05 PM on October 9, 2015
This thread is closed to new comments.
Fair warning, though, it might not be something you want to participate in. I have a not rare but certainly uncommon neurological thing and reading about other peoples' experiences is just awful. When I found a facebook group (and this was many years ago, when facebook wasn't as widespread and groups were pretty new), at first I was like YES, PEOPLE WHO UNDERSTAND, FINALLY, but it was day after day of reading peoples' sob stories (and woo medical advice, and horror stories about multiple surgeries) and it started to be an emotional drain. (It makes sense, though, that the people who are most active in a community about symptoms of a medical condition are generally going to be people for whom those symptoms are the center of their life.)
Also keep in mind that the "research" and "information" you'll find on facebook and reddit is going to be rather crap. But if you're looking for people to share your story with and get feedback about how to cope, that's where you should look.
posted by phunniemee at 12:28 PM on October 9, 2015 [3 favorites]