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MG Long Road to a Diagnoses
My Neurologist informed me several weeks ago he thought I have MG. I have been having symptoms as fare back as 1995, episodes of weakness that improved with rest. At first I did not think anything about it until my mom died in 1999 of ALS. I went to several doctors about the weakness and I was told I did not have a problem. In 2002 muscles on one side of my face went dead, I was told it was Bells Palsy and I would get better. I did get better but one eye and one side of my mouth stayed droopy. The weakness kept getting worse and the frequency of episodes kept getting more frequent.
My GP final sent me to a Neurologist who performed blood, repetitive nerve stimulation, single-fiber electromyography, pulmonary function tests, ice pack test. The blood test cam back negative, I am not sure about the repetitive nerve stimulation test, but he did get a little excited about the single fiber test. He gave me Mestinon which very quickly helped my drooping of the one eye and side of my mouth, but did very little for the general weakness. He then gave me 60mg of Prednisone which made me feel some what better early in the day but much worse latter, which seamed to confuse the doctor. He is now reducing the Prednisone to 10mg a day and has prescribed Sertraline, i guess he wants to make sure depression is not making things worse. I have been out of work for over 3 years, I was laid of as a maintenance person at a university, I was just too slow. People would see my eye and mouth and end the job interview and send me on my way I tried to start several business but I just could not do the work in the time frame the customers wanted. It would have been easy if all the test came back positive, instead a lot of resources are not available to me because people want to think the worst about everyone, and without everything coming back positive I guess I look like I am not telling the truth, even though the Mestinon did work on my face. Now I am out of money, and I am being told it could take 2 years to get disability because of the unusual nature of MG, if I can get approved at all. |
Hello and welcome to the NeuroTalk Support Groups.
Regarding your last sentence about disability... I just wanted to let you know that there is also a Social Security Disability Forum if you ever need it as well. There are good informational links in the Sticky threads at the top of that forum. |
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