Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Help

K3nzi3
K3nzi3

Hi I am in need of some support... the doctors tell me that i have conversion disorder or a complicated migraine. They have the blood tests out for Myasthenia Gravis but i can even go to work because of the weakness and the eyelid drooping. I was wondering if someone could talk with me about there process in getting diagnosed. I am starting to loose faith in myself.... 

joel123
joel123
Hi,

You should have a tensilon test to see if you have MG..... works very quickly..... and is a trademark indicator... I can't offer advice otherwise, but hang in the there!.... and stick around there as there are lots of good people that will give more info and support you too!
Joel
K3nzi3
K3nzi3
Thank you for responding, I had that while I was in the hospital and it helped a lot but my doctors response was that he couldn’t explain why it worked. I didn’t even know that was what it was until i researched it. They gave it to me during a crisis situation and i was able to talk and move again and breath....
msdoublevision
msdoublevision
I was diagnosed thirty years ago, but it took almost three years for anyone to figure out the diagnosis! I had eyelid drooping and double vision. The problem was that with an HMO, it might take months before I would get in to actually see a doctor and then the symptoms would be gone. I felt as frustrated as you sound. Don't despair. Ask for these blood tests:
ACETYLCHOLINE RECEPTOR BINDING ANTIBODY
ACETYLCHOLINE RECEPTOR BLOCKING ANTIBODY
ACETYLCHOLINE RECEPTOR MODULATING ANTIBODY

You are not alone! Hang in there.
K3nzi3
K3nzi3
Thank you some of those tests are still out the musk test just came back negative....
PeterL
PeterL
Ice pack on the eyes is a good indicator and often done by the Ophthalmology Department when they suspect the possibility of MG. It's not definitive by any means any more than most of these tests or at least a negative result doesn't necessarily mean you don't have MG. In there somewhere is the dilemma that the average doctor faces when faced with someone with possible MG. You need to see an MG specialist to be sure. Take care.
K3nzi3
K3nzi3
Thank you maybe i should schedule an appointment with the ophthalmologist when i do the ice pack test at home it really seems to help.
Rhanson
Rhanson
Ask for a trial of Mestinon (pyridostigmine)-- a medication that you take a 60mg pill, 30-45 minutes later you feel much better and then a few hours later it wears off. For many of us with MG, it seems like a miracle drug when we first take it. It has some bothersome stomach side effects, but they can be controlled. If it makes you obviously better, then you likely have MG. However, if it doesn't work it doesn't rule out MG.
In the days before all of the blood tests, emg tests etc, doctors often diagnosed MG based on symptoms and response to Mestinon. Nowadays they insist on tests that although they work for most folks, don't pick up all MG. The tensilon test is similar to taking a mestinon pill.

Good Luck
Russ
K3nzi3
K3nzi3
Thank you so much