Hello Everyone,

I am a 41 year old woman in BC, Canada, who’s been experiencing intermittent, severe muscle weakness for the past 8 years, and as yet I have no diagnosis. I have a lot of the symptoms that go with MG, but have had negative antibody tests, including for MuSK, and a negative EMG, which was done while the weakness was in remission. All the other muscle testing has also been negative when I am not weak. The weakness has been coming on for 2-4 months, 1-2 times per year for the past 8 yrs.

I first got weak in 2006 after a laparoscopic surgery to formally diagnose endometriosis, which I’d had since the mid 90s. I had a hard time recovering from the anaesthetic, with difficulty breathing, etc, and then was just stuck on the couch for over a month afterwards. Then I was tried on a bioidentical progesterone med to slow the endo growth, and on the 2nd day after taking it, my speech became slurred and I got too weak to walk, collapsed on the floor, unable to even lift my head.

This has continued to happen, after each of four different hormone meds prescribed for endometriosis, a series of travel vaccines, a detox, a bad flu, and a course of antibiotics. The weakness comes on after I try moving around normally, gets worse, with slurred speech, resulting in collapse and also extreme thirst afterwards, weird muscle tremors here and there in my body before weak spells, heart palpitations, sometimes a metallic taste in my mouth, extreme thirst, and weird night sweats where I’d be just drenched, with a metallic odor to the sweat, to my nose. When weak, my bladder muscles want to give out too. When I try to push myself when weak, things go very badly, and I have had trouble breathing and swallowing too.. it's pretty scary when this happens. Also, the weakness gets much worse before my menstruation, and most often improves somewhat afterwards.

Other MG symptoms I have are occasional ptosis, with left eyelid drooping, facial muscles very lax, and a positive response to mestinon. but no diagnosis, and the Dr starting to ask about psychological factors.. I really feel he is barking up the wrong tree here.. When I am well, I am very happy and engaged with life, but when this weakness and fatigue comes on, it is very stressful and scary.

I’d love to hear from anyone who’s experienced something similar, or who has any ideas or suggestions for me. Many thanks in advance, and best wishes to everyone!

Blessings to All, T