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Old 09-29-2010, 09:29 AM
craftyRCC craftyRCC is offline
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Join Date: Sep 2010
Location: Central NJ, USA
Posts: 123
10 yr Member
craftyRCC craftyRCC is offline
Member
 
Join Date: Sep 2010
Location: Central NJ, USA
Posts: 123
10 yr Member
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I feel very lucky to have "found" my neuro purely by accident. My PCP did a neuro referral while I was in the hospital. It was determined at that time to be a Vit B12 problem.

I saw my neuro again about a week after discharge, he ordered the antibody tests that day and an EMG two weeks later. When I went back for the EMG he said he had one more test he wanted to due for the MG, it was the MuSk antibody test but we needed approval from my insurance company. We waited almost 6 weeks for them to deny the test. They felt there wasn't enough clinical data to support the request. Antibodies were negative at the time, EMG was normal. So when I spoke with my neuro I turned into a crying fool on the telephone, I was sure the only way to know for sure about MG was the MuSk test. He referred me to the Neuro-diagnostic lab at UPenn for the SFEMG, and decided to start the meds after the test.

So just by accident I ended up with the MG guy in my area, I thank God every day for sending him my way! When I read how long some folks wait just to find the right neuro I know just how lucky I am.

I'm a nurse so I don't make a very good patient. I know I need to be a patient patient, all my doctors keep telling me to stop being a nurse for a little while and just be a patient! I could think of so many neurological things that could have been wrong, I never thought of MG, all I had ever heard of was the ptosis,I knew very little about MG before all this started, I'm learning more everyday. With all the info on the web and all the first hand experience the folks on the board have to share I know it will all work out!

Thanks again for sharing all your knowledge!
Rachel
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