I don’t really know where to start. I have Ehlers Danlos Syndrome and all the fun features that turn up with that, including using a wheelchair. I’m a professional musician.
The last two weeks I’ve had episodes of leg pain, odd sensations and tingling. A&E did a head CT and found lesions in my brain. They said they’re fairly sure they know what it is, but need a brain and spine MRI to confirm. The discharge notes told me they’re worried about MS.
I’m flopping between relief that they found something and terror that I will lose my ability to play viola. I read that DMTs aren’t offered to wheelchair users. Family are reminding me I’m not diagnosed yet, but I deal with anxiety by knowing as much as possible. I guess I want to know everything will be ok.
Hi there and I’m sorry that you are going through such a scary time. I’m no medic but: as I understand it brain lesions can be caused by various conditions and events and I think that some, e.g concussion lesions can go away. I’m pretty sure that the notion of no MS treatment for those using wheelchairs does not refer/ apply to those using wheelchairs because of conditions other than MS and that the thinking is that if someone’s MS has progressed to the point of being wheelchair bound then treatments aren’t going to make a lot of difference. I’m not up to date on the latest MS treatments but some of the more recent ones might well be helpful for MS folk in wheelchairs.
Did A& E say anything about what happens next? Only a neurologist can tell if it’s MS or not
You’re not in a wheelchair because of MS, so I can’t imagine having a completely different disorder would be held against you if you did turn out to have ms and need treatment. please try not to worry about that, but of course I completely understand that you have a lot on your mind and so much to worry about at the moment that it’s hard to tell real worries from theoretical ones.
I’m sorry that you’re having such a difficult time and hope that you get some clarity and reassurance soon
They’ve sent me over to the hospital at home team for an urgent MRI. I’m not clear on how that’s different from regular outpatients but hopefully it’ll be quick. I didn’t get much more information than that. I only even know about the suspected MS because I went looking for the discharge notes (on previous occasions the notes have been a little creative with the truth)
I’m glad to hear that the wheelchair exclusion may not apply though.