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...
Hi guys,
I decided to join the forum for some more information.
My mom has been diagnosed with probable seronegative myasthenia gravis and/or ALS. She is a complicated case, and has some things that are atypical for ALS. The complaints started in April 2016 and have gotten worse.
Mestinon helped in the beginning and still helps, without it she doesn't have any strength in the upper arms. She is on Mestinon, Prednisone, and also Azathioprine. The main complaints she has are the weak neck, loss of strength in deltoid/shoulder muscles, and shortness of breathe. The deltoids are showing some atrophy now. The double vision disappeared after starting mestinon and prednisone. The first week of Prednisone was great, she had strength, the neck felt better and she doid not have to use a brace. But 1 week into Prednisone and the complaints starting coming. Because Mestinon and Prednisone helped with the double vision and also the strength, especially in the beginning, they think it's MG. Also, the fluctuation of weakness is not something seen in ALS.
Recently, she was admitted to the ER due to a Myasthetic Crisis after the dosage of Prednisone was lowered from 12.5 mg to 10 mg.
She could hardly breathe and was treated with IVIg for 5 days. The breathing has gotten bitter, but she still gets shortness of breathe when she does too much. They have also started NIV for during the night, as she has difficuly lying flat on her back.
I was wondering if there any other MG patients who, although being treated, also have a low forced vital capacity of the lungs.
In her case it fluctuates and at the last test in the hospital it was around 37%.
We are worried that it could still be ALS AND MG.
There are some folks who have both ALS and MG. ALS is pretty difficult to diagnose as how it is done is to rule out other causes of the symptoms (like MG). Even the RNS test can be positive with both MG and with ALS.
Has she taken more than 10 mg of prednisone in the past? To get my MG under control I took up to 60mg per day for several months. How long has she been taking azathioprine? It can take months to become effective.
Hope things improve. About the only advice I have is to persist with her neuro. Sometimes it is necessary to push them or if that doesn't help to get a second opinion
-- Good Luck
Russ