Quote:
Originally Posted by blondieslp
I have been treated in the last few months as though I have myasthenia gravis but do not have the antibodies to it. I am on mestinon and more recently prednisone. I was really beginning to think there is a light at the end of the tunnel but now my neuro is cutting me back on the prednisone I think to get me to an every other day dosage. But I am beginning to feel like crap again. My emotions are beginning to get a little out of hand and the weakness I feel in my chest is getting worse. I have had most of my symptoms in my eye, really bad throat issues ( hoarseness, can't sing well and at times my voice is very weak), neck and chest area. Is there anyone with similar issues that would be willing to share with me their experience and what the future holds? Any help would be greatly appreciated. I also cannot handle the hot humid weather. It makes me very ill and I just can't seem to function. Is there anyone out there that is AChR negative? I don't even show with Musk. Please help?  |
Hey blondie! I don't have any of the antibodies either, but have been dealing with MG for 18 years now. I have just been positively diagnosed with MG through an EMG about 2 years ago. Mestinon has never worked for me. I take prednisone during flare-ups. I refuse to take a maintenance dose in between. I used to have an episode about once every couple of years. After having my daughter 4 years ago, everything has gone hay-wire and my problems have worsened and become constant. I have recently discovered that my hormones are out of whack through working with a holistic healer. I reached out to her out of desperation. With her help, I came up with this idea that this may be causing my issues and have confirmed it through my medical doctors. The book "what your doctor may not tell you about premenopause" is wonderful. I urge every woman to read it and I have been using the natural progesterone cream called Uber Cream that is discussed in the book. I have been using the cream for three months and have no symptoms of the MG or Graves. I have energy, have corrected my monthly cycle, and have gone off of my anti-depressant, and have actually been able to loose some weight. The adrenal glands, thyroid, and thymus are all hormone driven and creating organs. If one hormone is deficient, the body, depending on one's sensitivity, may spiral out of control. Being deficient in progesterone, or estrogen dominance is believed to be connected to auto-immune disorders in females accordiing to the authors. The more I read, the more connections I am seeing and I find it to be exciting. I finally feel some control for the first time in years. Please read the book, it can't hurt. It's an interesting and an informative read if nothing else. Keep your head up girl! Don't dwell on negativity and don't accept other's horror stories as your own fate.