Quote:
Originally Posted by gr8ful
Some of those symptoms are common for MG. Some of them don't seem so common (metallic taste) but this disease has all sorts of shapes and sizes. If you respond well to mestinon that's great because it doesn't help everyone. MG or not, perhaps just being helpful is a reason to take it.
One thing you didn't mention is that MG is especially visible with repeated muscle movement. Has anyone tried to measure your fatigue response to repeated muscle motion (over say a 5-7 minute period)? The SFEMG test does that with an instrument but the neuro docs often try to measure muscle fatigue 'manually' by asking you to move the affected area to look for fatigue buildup.
Another test to try when ptosis is flaring is to put an icecube on your 'bad' eyelid to see if the ptosis reduces or disappears. All of that is good but you really need to see a neuro doc that knows how to diagnose MG. MG is not so common and even trained neuros seem to get it wrong sometimes. Good luck. I hope you have easy answers soon.
|
Thanks very much everybody, I really appreciate your thoughts and support! The MG specialist I saw is at a teaching hospital in a large urban centre.. he is the guy one would want to see, apparently, who diagnoses the difficult to diagnose cases. Where we left things is that I will try to get to him if I get weak again so he can do the manual muscle tests and look me over to see if he can "tell" it's MG, which seems a bit contradictory to what he said recently, that I don't have it based on all negative tests so far. I haven't tried the icepack thing yet, but the mestinon fixes the ptosis. I had taken a photo of myself with ptosis via my computer camera and showed it to him, but he seemed very dismissive and even suspicious of it. He said he's had lots of people try to "prove" to him they have MG by showing pictures etc. I guess he has to be careful. So that's where thing are parked.. I am going to keep trying to heal myself with nutrition, meditation, kundalini yoga etc. I figure that if my brain/body/system got itself into this, it should also be able to get itself out. I just need to persevere to figure it out and not give up on getting better. I've come across some interesting articles on things like candidiasis and celiac disease being linked to autoimmune conditions so I am going to making some dietary changes and see what happens.
I wish everyone the best in their healing too, and I look forward to sharing info on what helps.
Blessings, T