Karen, Have you had the MuSK antibody test, as Alice suggested?

The one thing that doesn't fit MG is loss of peripheral vision. Did they give a reason as to why that is happening? Was it a temporary thing or is it still there?

Ptosis, especially long-standing ptosis, can CAUSE astigmatism. That's what caused mine. I've had MG since birth or shortly thereafter.

You don't have fatigable weakness so badly that you have to be intubated from nothing going on!

What do you mean by "immune IgA count" and that it revealed something. Are you talking about the serum IgA blood test? Was yours normal. I'm not certain what you're saying - can you clarify that? Did they run the IgE, IgM, IgG too?

"Your immune system is noticing the incision." Wow. Really? That's not very scientific. So your immune system, "sensing" that there had been surgery, is causing your muscles to weaken to the point of paralysis and intubation. Do they think patients really buy that BS?

MG, either ACh, MuSK or any other of the unidentified antibody MG's, is quite simple. 1. Do an activity 2. Muscles get weaker to varying degrees. 3. Rest (and drugs) make muscles stronger (relatively).

No other disease is quite like MG, except LEMS (Lambert-Eaton Myasthenic Syndrome) and CMS (Congenital Myasthenic Syndromes, which are genetic and not autoimmune). They all involve variable muscle strength either worsened or improved with activity. LEMS can initially improve with activity but then get dramatically worse. Some CMS are like MG in that you don't have enough ACh (acetylcholine). Other CMS's are where there is too much.

Did the start of your symptoms in 2009 coincide with pregnancy at all? Just curious.

Did they do a pathology of your thymus? The fact that it's growing back so soon is interesting.

Even if you follow the protocols for MG during surgery, the fact is that the drugs given during any surgery have the potential to make it worse. You can take all of the precautions in the world and still get worse. Were you given morphine or any other pain killers? Morphine can tank an MGers breathing.

Sometimes with Mestinon, it's not only the space in between taking it but the dose amount. Do you have a good neuro to talk all of this over with? Some people do better on a smaller dose but with more frequency. It all depends! Don't make any changes without talking to your prescribing neurologist first!! You are obviously not doing well and any changes could make you worse, like Abby mentioned about cholinergic crisis being an issue too.

Myasthenic crisis: Not enough acetylcholine getting to the muscles.
Cholinergic crisis: Too much acetylcholine getting to the muscles due to too much Mestinon.

Keep talking! For that Johns Hopkins doctor to so arrogantly say this isn't MG is nonsense. And, BTW, an EMG or SFEMG in MG can be positive and then negative and then positive . . . Oy. A good MG expert knows that!

Take it easy. And even though you're a Mom, there are ways to reduce any impact on your MG. Or "incision disease."


Annie