Well, tests can be positive and negative. A negative test is useless, as if a negative proves a positive. Duh.

My thoughts . . .

Go see a pulmonologist. Get concrete answers on what your breathing pattern is. Ask them to do MIP and MEP, and ask for ALL of the MIP and MEP readings, not only the highest ones.

See your internist and have the MTHFR done. Ask to having morning, fasting cortisol and electrolytes.

Consult with a different endocrinologist to assess if there is any endo reason for your potassium levels.

And get copies of the results of both SFEMGs, if you don't have them already.

A negative SFEMG after a positive one doesn't mean that it negates the first one. MG is a clinical diagnosis, backed up with tests. You may or may not have it, but, if you do, you HAVE TO KNOW! It can be life-threatening.

I have positive ACh antibodies. I had a highly positive Tensilon test and dramatic response to Mestinon. I've had an MG crisis where my O2 went down to 66% while sleeping and 70s to 80s while awake. And my SFEMG? ONLY borderline. And I've had MG my entire life, but only figured that out in 2006 (misdiagnosed as lazy eye at age 10). And you don't think doctors can miss MG? Yeah, right. Not one eye doctor even noticed that I had binocular, bilateral ptosis that was fatigable. Not even when I had bad double vision in college—which they couldn't figure out a reason for!

I also have permanent damage to my peripheral nerves from my B12 deficiency. I cannot find specific articles (yet) that address how that might affect a SFEMG. It might, however.

There are a lot of things that can affect a SFEMG: hydration level, body warmth, a technician's experience, accuracy of equipment, bias while analyzing results, etc. Subcutaneous fat of 9mm can reduce an EMG signal by 80 percent. Yeah, 80. Some studies show that men's muscles fatigue more rapidly than women's do, so women might need a longer test.

Trust your instincts. If your muscles fatigue after activities, that would indicate MG. If you have a "static" weakness, that might be from RSD. As you said, it's not nothing and is impacting your life significantly.

I'm really sorry you are going through all of this. What else can we do to help?


Annie