Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I'm new to the group as well as to MG. Diagnosed on May 24th of this year. Started with droopy eye and progressed from there.
I'm 68 years old and my whole life has been turned upside down. Two hospitalizations since being diagnosed. No energy, major muscle spasms. Blood sugars all over the place because of the Prednisone. Shortness of breath, difficulty chewing & swallowing, drooling :(
Each day I wake up on this side of the grass is a blessing.
Thanks for letting me vent.
I was diagnosed with MG at age 66, May of 2012. I had a hard time, was hospitalized, but with mestinon (pyridostigmine) and prednisone, got it under control in about 5 months and got back normal vision and normal muscle function. I was taking 60 mg prednisone each day, and that was not good for me and began the taper to the lowest effective dose. I was one of 15-20% who went into remission after a year and now have been MG free and med free for a year.
Prednisone is quite effective in getting our immune system to stop making the bad antibodies, but it has side effects that make it good to get MG under control, but not so good to take long term to keep MG under control, so we taper it down and consider the alternatives if the low dose of prednisone is still causing problems. Mom had to take it 25 years (age 65-91) to keep an autoimmune condition under control and lived well with it and would have probably lived in severe pain without it)
And now for some speculation on my own MG cause and treatment:
Possibly a coincidence, or maybe not, I began treatment for hypogonadism (low testosterone) the same time I began tapering prednisone. . Prednisone can cause osteoporosis and I was diagnosed with mild level of it. I started taking fosamax and was also tested for testosterone levels and found very low (either due to natural causes or to the prednisone effects). So for bone density improvement, I was also prescribed testosterone gel.
In about 5 months, I had tapered totally off of prednisone and mestinon with no MG returning--in full remission.
I asked my endocrinologist if autoimmune diseases could be related to hormonal changes and testosterone levels, and she said -- MG is a disease of older men and younger women -- although there are many exceptions, and although there is no clear research linking MG autoimmunity to hormone changes, there is clearly some role in it and with autoimmunity in general. The neuro said she didn't think MG and T-levels were connected from anything she had read, but the endocrinologist said we shouldn't stop taking the testosterone replacement to test the theory!
Anyway, I generally suggest to men of my age that they have a testosterone level test -- although I may be totally mistaken in my own connection of T-levels and MG.
We humans tend to link things that may not be linked in reality, so I am not sure about this, but I fear if I stopped T supplements, I would lapse back into MG. I am treated to be just at the low end of normal levels. My osteoporosis is actually disappearing, my muscles are recovered, and I feel pretty normal and as I say, I am MG free without other meds.
Good Luck Russ
I've just come from my Neurologist appointment and he says the IVIG is working well .... able to keep my eyes open and able to keep head up. Lots of nerve pain down the left side .. but hey, that's something I can live with. My eyesight is good but the fatigue is just to much some times and I spend way more time in bed than I should. I can barely walk .. the doc has ordered a pulmonary function test and to continue on the IVIG for at least a year and get my Prednisone down to 20 mg per day by months end. Mestinon causing cramps like you wouldn't believe but nothing I can do about that, at least for the time being.
Hope you all have a great week.