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...
Anyone else had any luck with getting Medicare to pay for Mestinon Timespan? 30 pills cost me $123.00!
I just returned from seeing the neurologist. My thyroid blood test was normal with no sign of hypothyroidism or Hashimoto's Disease. My T-3 was 2.81. Neurologist said 2.57 to 4.43 was the normal range. My T-4 was 1.21. Normal range is 0.81 to 1.70. So I guess that rules out Hashimoto's Disease. She wanted to put me on prednisone for a coulple of weeks to maybe "kick" the MG but I've heard so many bad things about steroids that I asked her to first let me try 180 mg. of Mestinon Timespan which has always helped me before. She agreed and said if it hadn't improved in a couple of weeks maybe I should consider prednisone. I welcome your thoughts!
I just returned from seeing the neurologist. My thyroid blood test was normal with no sign of hypothyroidism or Hashimoto's Disease. My T-3 was 2.81. Neurologist said 2.57 to 4.43 was the normal range. My T-4 was 1.21. Normal range is 0.81 to 1.70. So I guess that rules out Hashimoto's Disease. She wanted to put me on prednisone for a coulple of weeks to maybe "kick" the MG but I've heard so many bad things about steroids that I asked her to first let me try 180 mg. of Mestinon Timespan which has always helped me before. She agreed and said if it hadn't improved in a couple of weeks maybe I should consider prednisone. I welcome your thoughts!
My neurologist recommended a low dose of prednisone when I had just a droopy eye lid and some mild weakness. I didn't want it.
then
2 months later I had a crisis and was put in hospital. So weak....they put me on 60 of predisone and I was one of the few who reacts negatively before I get positive results.
So now I am down to 12 1/2 of predisone. If I go lower I have symptoms.
Hind sight is 20 20 .
If I knew then what I know now....I would have gone on low dose.
It may have prevented my crisis.
The thing about this world....we get the test before we learn the information.
Ann