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...
Nerve Conductive says MG
Lab work says Negative
Weird thing is I have all the symptoms( I think) droopy feeling face, ear pain while trying to eat, hard time swallowing, been hoarse for over a year ENT DR says muscles in throat not working, for the past week I have been laboring to breathe....just walking across the room.... my hip doesn't want to work, very weak in arms and legs, difficult holding myself up or holding my purse.....Have only experienced Ocular symptoms 3 times, once was today.
Mestinon helps.
Any advice please, or am I going crazy???
Lab work says Negative
Weird thing is I have all the symptoms( I think) droopy feeling face, ear pain while trying to eat, hard time swallowing, been hoarse for over a year ENT DR says muscles in throat not working, for the past week I have been laboring to breathe....just walking across the room.... my hip doesn't want to work, very weak in arms and legs, difficult holding myself up or holding my purse.....Have only experienced Ocular symptoms 3 times, once was today.
Mestinon helps.
Any advice please, or am I going crazy???
The blood tests (and there are several different ones for different antibodies) do diagnose MG, but as it appears there are more antibodies than tests, a negative blood test does not rule out MG.
The nerve conduction test again can diagnose MG, but a negative one does not rule it out.
One way of trying to figure out if you have MG is if you improve significantly with Mestinon (actually called pyridostigmine generic name). However, not everyone with MG responds to it. Very few conditions are helped by Mestinon
Doctors like to have a clear test for a diagnosis and so keep trying different ones to try to confirm their diagnosis of MG. It is probably worse to be mis-diagnosed than un-diagnosed. So I would continue taking tests just to rule out something different.
One of our members, who passed away a year ago, had MG as side effects of cancer. Some variations of MG can be a side effect of cancer, so getting a cancer check is a good idea too. The first suspect is the thymus gland and you likely have already had a scan for that. A test often given is for a variation of MG called Lambert Eaton and that variation is often a sign of cancer.
Good Luck
Russ
Having CT Scan Monday (was wondering if I even should go if Labs were negative)
I am currently on Mestonin 60 MG 3-4 x a day. Initially it helped ( a week ago) now seems weaker, takes edge off I guess then wares off really quickly.
Sorry, still learning, so DR. Said I had MG prescribed med based on Nerve Conductive tests and symptoms. Labs (through patient portal/quest labs haven't seen or spoken to dr.) show negative blood work