Myasthenic Crisis

[seishin]

I've been diagnosed with MG and am taking Mestinon, which helps me feel relatively better.

My preference would have been not to go to the emergency room, but boards (including NeuroTalk) & the BCBS Nurse Hotline said I should go to the E.R, so I did. When I felt my throat closing & had the palpable popping sound that worsened when I would lie down, I couldn't get guidance from the neurologist or find what to do about it. I was afraid it was leading to a myasthenic crisis, thus the final E.R. visit.

Trust me, I won't be going back to an E.R. unless I feel I'm dying.

[Tracy9]

I'm glad the Mestionon is helping you. That is probably one of the best ways to know if you have MG...to see if it helps you.

I brought up being overweight only because some of the specific symptoms you listed have become problems for me since I gained a lot of weight; specifically sleep apnea, back pain, the breathing issues and increased heart rate upon exercise. They weren't issues before and they got better when I lost about half of what I've gained.

I just know personally, I'd much rather have weight related issues than an incurable autoimmune disease any day! So much is completely out of our control; to me anything that can be helped is a plus.

[seishin]

The back pain has been chronic for almost 4 years now. If I dared to sleep on my back, I'd wake up at an agonizing 10 on the 1-10 pain scale. I used to describe it as a feeling of being "locked into place as if the muscles no longer existed to allow me to shift out of that position." My boyfriend would have to push me over onto my side to "unlock" me from the position so I could get onto my feet.

Blessedly, the back pain has been GREATLY reduced since starting the mestinon. Although I know MG is not a good disease to have, the back pain was making life unsustainable, and I'm still relishing the joy of not having that pain be such an overriding & influencing factor.

[Tracy9]

I am so glad you have gotten some relief; that sounds horrific! I got a lot of pain previously from not having the strength to hold up my head, in my shoulders and back and neck, etc. I compensated by laying in bed most of the time! Thankfully IVIG and mestinon have helped a lot.