Hi, Rhod! I'm so sorry that your husband is having a relapse.

When that happens, they need to check out reasons for it. Is he overdoing things, and being too hot (like being outside in the hot weather)? He could have another issue, such as a thyroid problem.

And please school those doctors!!! When an MGer isn't eating well, they can have electrolyte or fluid imbalance. And, yes, nutritional deficiencies. A low B12 and D are common. They should do a comprehensive metabolic panel to see if he has an electrolyte imbalance. That test also looks at albumin, another indicator of nutritional status. CO2 is also checked, and can show a trend of worsening of MG if too high.

Good grief. Do we have to beg for sensible tests?

There is a REASON that your husband is worse. And test results don't mean squat. According to MG experts, a person with MG can have negative antibodies and SFEMG, and be unable to sit up. They can have highly positive antibodies and SFEMG, and be doing well. What is important is how a MG patient feels, not tests. And those antibodies can be busy attacking muscle receptors and not show up on the test (called "tissue bound" antibodies).

The justification for more tests? He is worse, and there are usually logical reasons for that. Duh.

Might be time for a 2nd opinion. OR, go to a primary care physician or internist for basic testing. Was it a neurologist who wouldn't do more testing or a primary doctor? Work the system!

If you have insurance, you should not have to pay for a reasonable test. That's nonsense.

What can I do to help? How is feeling now? Don't mess with a downward trend in symptoms. Is he having trouble breathing? Walking? What are his symptoms?

Please let us know if we can help.


Annie