I need help

[kathyrooker]

I am in Pennsylvania and I need to have a SFEMG. I have been to several neurologists who don't do them. They said I need to go to Philadephia. I called the ALS/MDA clinic there and the nurse said she didn't know if they did them. Does anyone know where they do SFEMG in PA or surrounding states or do you know how I can find out? I am so tired of being sick and being refused any kind of medical care that helps. I don't even have a doctor any more.
Kathy Rooker

[GUMBY]

Try this, Univ. of Penn. # 215 662-2623. Address 3400 Spruce St. Phil. Pa. Also go to google, type in sfemg, Univ. of Penn. I wish you luck, don't give up. If you are on meds, find out if they can alter test. Did you have an Emg??

[kathyrooker]

Thank you so much Gumby. I am not on any medications at all. The only thing my doctor ever gave me were antidepressants and Lorazepam (which I refused to take). He put me on Prednisone last year because he insisted that my breathing problems were caused by asthma. The tests proved he was wrong and he wouldn't give me any more, than claiming I was suffering from anxiety. I am seronegative. I have had two EMGs, neither was done properly, and it is quite common for people who have mild MG to have normal EMGs. I did have some decrement on the second one, but it wasn't more than 15%, so they called it normal. I know it's mild, I have never collapsed or had a respiratory crisis, or any other terrible episodes that I have read about. I feel so lucky compared to people who have these problems. I can only work for a few hours though, and it is agonizing. I come home and go immediately to bed, sometimes so weak, I am in tears. I just want someone to help me so I can go back to being a productive person. I don't have a choice unless of course we move to the street. I can't get any financial help without a doctor saying I can't work, and they keep saying I can do easier work, but right now, I can't. Even sitting at the computer is causing my vision to go nuts and my neck feels like it's broken, and I have only been sitting here for half an hour. How would I be after 8 hours? Of course, I have no idea how long this episode is going to last. So I just keep living like this, hoping that someone will help me eventually. I will call them today, or maybe look it up first. Thanks again.
Kathy from PA

[loisba]

Hope all goes well for you, Kathy. I'm in much the same boat you are, but I was initially diagnosed by an MG specialist, so even though I'm apparently seroneg, and have had a neg EMG, my GP knows I have MG, and prescribes my Mestinon, which is basically my lifeline. But that is the only medication I have access to. I can entirely sympathize with your situation. If you could at least get your family doctor to believe in you, he might be able to do like mine does, and give you Mestinon.
Keep searching for a neuro.
Hugs,