New here... possible MG..?
 

Hi everyone

I'm new, and I'm thinking MG might be a possibility for a bunch of symptoms I'm having. ...and I know how these posts can be, 'oh someone read something online and is overreacting:rolleyes:' type of thing, so hopefully I don't come across that way. I have a neurological genetic disorder - neurofibromatosis type1(NF1) and have participated in online support groups for nearly 10 years(!!!) So I've been on the replying end of these posts.

I've been experiencing weakness and heavy sensation in my left eye for the past four years. The intensity and frequency's been getting worse. Initially I thought I needed a new pair of glasses but my new pair didn't help. I've been to a whole bunch of eye docs, and the dx is always... fatigue.

Anyway, whenever this happens, it feels like my eye/eyelid is drooping but neither are. I don't have double vision, though I'm starting to notice some ghosting. There's some twitching, but I can't tell if it's my eyelid, muscle surrounding the eye or my cheek, except on the rare occation the twitching is really obvious. I also noticed some sensation change on my left cheek... it's as if sharp pain sensation is diminished while pressure sensation stays normal. Yesterday I had this odd weak/lightheaded/out of body feeling, only on the left side of my body -- this has happened before and I actually can pinpoint first time it happened. I've also been having chewing fatigue... (and typing, like. now.:()

I just think all these things occuring only on one side can't be a coincidence.

I'm not sure what to do. I feel like my eye doc is just gonna give me that 'she's overreacting' look when/if I go back. I'm afraid it'll be too long of a post if I get into why I believe my NF1 has absolutely nothing to do with these symptoms, so I'll skip that. I know the NF always plays a factor when I bring up any new symptoms to any of my doctors. They tell you to stop connecting every little thing to your condition yet they do.

Another thing that I believe makes MG a possible dx is the fact on my chest CTs, the radiologists have noticed abnormal tissue in front of the heart. One rad. thought residual thymic tissue, another thought it was 'just' a NF related tumor(they always do). Because of my previous job experiences, I've learn to read ct/mri scans and where most would have fat in front of the heart, whatever I have there isn't giving off same signal my fat tissue. it's closer to the muscle signal.

So, I just want to know, I'm not crazy for considering MG as a possibility, right? Self-diagnosis isn't a good idea I realize, but I dx'ed myself with NF as a teen years before any medical folks noticed. What's should I do next? I don't want to nilly dilly and just tell my doc 'maybe it's MG' but if I do that, I'm pretty sure what'll happen next.(oh you silly patient...:rolleyes:)

I've been through the specialist hot potato game due to my NF so the thought of trying to getting a new(maybe) diagnosis is dreadful. Most NF specialists are peds so it's unlikely they'll be familiar with MG. Mine even less so b/c he's really an oncologist. sorry this got so long...

Welcome:)
I've not had any eye problems, so I can't weigh in on the MG-ness of your sx

I would get a 2nd opinion on the abnormality on the chest CT

I wish I had something more helpful to say

I just think all these things occurring only on one side can't be a coincidence.

MG is not out of order, but I'd be more suspicious of decreased blood flow to one side of the brain.

One hallmark of MG is that the muscular weakness improves with rest. In my case, if I talk too much, 4-5 minutes continuous, my speech starts to slur so badly as to be nearly unintelligible. If I stop talking for a few minutes my speech returns to normal only to degenerate into slurring if I again speak too long.

I have been officially diagnosed yet, and my symptoms a re very mild. More of an aggravation than a problem at this point.

Good luck in your pursuit of a resolution to you issues.