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...
all tests negative
anyone clinically diagnosed? all tests negative? i had a dramatic improvement with mestinon n GP suspects myasthenia tho was diagnosed with periodic paralysis last year and i improved a lot on just diamox and K
but am worse now, with new symptoms.breathing, jaws weak
the neuro told me my neck isn't weak cos i can hold my neck up,if it were truly weak it would fall. mom said it did so during episodes and we dont want it to go that bad!
while recovering from episodes, i can manage to hold my head up but can't move it much. anyone has similar trouble?
trying to find a doctor who'll help but that isn't happening
About 15-20% of those diagnosed with MG have negative blood tests -- seronegative-- on tests for several antibodies. Then the emg test is done -- and if it is done by an experienced person generally picks up most of the rest of us with MG, however not always. There are folks who have MG and get treatment for MG who are negative on all of the tests. Generally if mestinon helps, that does mean you have MG (although some folks mestinon does not help and they have MG).
If you are not taking mestinon, ask for a prescription to try it again and see if it helps.
Sorry you are having diagnosis problems, but that does happen with MG and with other conditions that are similar to MG. One has to persist with trying to find out what is wrong and that means trying to carefully log your symptoms, the when and what happens and then try to figure out any patterns.
Good Luck
Russ
If you
What immunosuppressant did u take, & how long did u have to take them to see a difference ?
Good Luck
Russ