fighting for a diagnosis
I just finally got my labs done to be tested for Myasthenia Gravis after 3-4 years of random pointless testing and complaining to 6/8/12?? doctors now about my muscles wearing out so quick it's pathetic. My neurologist was basically arguing with me about not wanting to check for it even though my rheumatologist sent me to her for that specific reason and I've been telling my pcp to test me for it since the beginning. So I'm hoping I can get an idea from other people what kinds of problems the have with MG to compare my problems to.
As I said, my muscles wear out almost instantly doing simple things but when I actually manage to do something like cleaning the house or whatever, I'm insanely sore the next day and usually for a few days after. My left eyelid was droopy for quite a while but that's gotten slightly better although I still have trouble keeping my eyelids open, I pretty much look stoned all the time. Especially lately I've been having a lot of trouble talking for more than a few words, I start slurring or just completely tripping over my tongue. I have some trouble with blurred or double vision but I always attributed it to just being so tired all the time, which is another thing, sleep does absolutely nothing for me. I usually wake up more tired than when I went to bed and feel that way for a few hours after I'm up. I have trouble swallowing quite often, food just stops going down and gets backed up so I have to drink something to force it down before I start choking. Another thing is when I try to be physically active I run out of breath in no time and have to stop and rest for five or ten minutes.
I have a lot more symptoms that I'm not sure would be related to MG like I'm super sensitive to light, I have chronic pain EVERYWHERE that comes and goes and moves around, I have really bad memory problems like looking for my keys when they're in my hand or going to do something specific and forgetting all about it and go do something else instead then remember it later, go to do it again and the same thing happens 3-4 times. My coordination has gotten horrible, I drop things and knock things over all the time like I've lost all spacial awareness. I get vertigo when I tilt my head. When I try to grip something kind of tight like washing your windows with the squeegee at the gas station, by the time I'm done my hand hurts so bad it feels like someone hit it with a hammer. Headaches and migraines, lots of GI problems, and probably more I'm forgetting.
Any thoughts or input would be greatly appreciated, from what I've read and heard it sounds like a dead ringer for MG but the again my rheumatologist also questioned it being MS so :/
As I said, my muscles wear out almost instantly doing simple things but when I actually manage to do something like cleaning the house or whatever, I'm insanely sore the next day and usually for a few days after. My left eyelid was droopy for quite a while but that's gotten slightly better although I still have trouble keeping my eyelids open, I pretty much look stoned all the time. Especially lately I've been having a lot of trouble talking for more than a few words, I start slurring or just completely tripping over my tongue. I have some trouble with blurred or double vision but I always attributed it to just being so tired all the time, which is another thing, sleep does absolutely nothing for me. I usually wake up more tired than when I went to bed and feel that way for a few hours after I'm up. I have trouble swallowing quite often, food just stops going down and gets backed up so I have to drink something to force it down before I start choking. Another thing is when I try to be physically active I run out of breath in no time and have to stop and rest for five or ten minutes.
I have a lot more symptoms that I'm not sure would be related to MG like I'm super sensitive to light, I have chronic pain EVERYWHERE that comes and goes and moves around, I have really bad memory problems like looking for my keys when they're in my hand or going to do something specific and forgetting all about it and go do something else instead then remember it later, go to do it again and the same thing happens 3-4 times. My coordination has gotten horrible, I drop things and knock things over all the time like I've lost all spacial awareness. I get vertigo when I tilt my head. When I try to grip something kind of tight like washing your windows with the squeegee at the gas station, by the time I'm done my hand hurts so bad it feels like someone hit it with a hammer. Headaches and migraines, lots of GI problems, and probably more I'm forgetting.
Any thoughts or input would be greatly appreciated, from what I've read and heard it sounds like a dead ringer for MG but the again my rheumatologist also questioned it being MS so :/
Replies
Hi there!
By the sounds of it, you do have quite a few symptoms of Myashtenia Gravis. My symptoms included double vision, low lung function (this was an interesting test! I had to take a \"deep\" breathe and count as high as I could on the exhale...I made it to about 20 I think), and the obvious of severe muscle weakness everywhere. I was a bit of an odd case though as my symptoms progressed over a few days as apposed to a few years!
I never had any pain or anything like that, but you said that they may be contributed to MS. I have no insight to that one, so I am incredibly sorry for not being able to put an insight there!
I really hope that you get your diagnosis soon! Having a diagnosis literally changes everything!