having trouble initiating a swallow.went to ENT and he said everything looked normal.had modified berrium swallow.normal.blood tests.normal.mri normal.went to nuerologist they seem to think that i have MG.tensilin test helped me swallow for about 30 seconds. nerve conduction study was abnormal.blood antibody test was normal and CT of chest was normal.they put me on mestinon 60 mg three times a day and cellcept 2000mg aday.been on the meds for a month and still having same problem swallowing.HELP...

Hi, Brian. Welcome to this forum.

Myasthenia gravis is caused by your immune system mistakenly attacking your muscles. CellCept works by suppressing your immune system. But it builds up very slowly. A month is probably too early to see results.

Mestinon, on the other hand, is just to treat symptoms, and it has its effect immediately. In fact, four hours after you take it, it's mostly out of your system. Do you notice a difference in your symptoms a half hour after you take your Mestinon? If you find your symptoms go away when you take the Mestinon, but come back after a few hours, you could talk to your doctor about taking the doses closer together. Be careful with the Mestinon, though--too much will make your symptoms worse.

Here's what we tell all the newbies around here: be very careful. Myasthenia can be unpredictable, and new symptoms can come on very suddenly. If you can't swallow, or have trouble breathing, or get very weak, or something gets suddenly worse, go to the ER or call 911. It can be an emergency.

For many of us, the disease settles down and gets more predictable after a while, but in the first year or so it can really send you surprises.

If the CellCept isn't working for you, there are other drugs your neuro can try that suppress the immune system. One of them is Prednisone, which works faster than the others, but has bad side effects. Another possibility is getting infused with immunoglobulin (through an IV. This is called IVIg). I just mention these so that you can see that if the CellCept really doesn't help, there are other options.

Abby

Hey, Brian. Welcome.

Cellcept can take awhile to fully kick in. PLEASE call your neuro and figure out what you can do right away. Like Abby said, there are other short-term options to get you better.

Was your neuro an MG expert? Was he convinced it's MG? I'm not doubting the diagnosis but a 2nd opinion by an MG expert might be a good idea.

Not being able to swallow is an emergency. You should get to an ER if you can't swallow hardly at all. It can be a sign of an MG crisis, where muscles get too weak and you need further treatment right away.

Did they do the MuSK antibody test as well as the Acetylcholine antibody test? Do you have copies of all of your tests? If not, get copies.

Bottom line is that you need some more help. Don't be shy about going in. MG can be quite dangerous if you don't get proper treatment. Hang in there.

Annie