Quote:
Originally Posted by Lindsaym
I am newly diagnosed and am soooo confused and mostly scared. I am so afraid of it getting worse. I am not real confident in my neuro right now, he is not the one that made the diagnosis, and actually in my opinion missed the signs (double vision, weakness, ptosis, positive ncs - which he diagnosed as peripheral neuropathy) because I had a negative antibodies test. I was diagnosed by a neuro opthomalogist. He says he knows MG, but he hasn't told me many of the warnings or medicines to avoid that I find online. He also initially also left me on a muscle relaxer that he prescribed for the nerves.
I am currently waiting to get into an MG doctor at the university where I live. My appt with this is not until the end of June. I talked to my neuro on Friday and he said that I needed to come back in this week probably to discuss other treatments that maybe Mestinon alone isn't doing the trick.
I am currently taking the ER Mestinon 2 x a day and I take the short acting as needed for breakthrough, usually around 10 and 3.
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I can truely say I know what you mean, and it sucks! I have seen three neuros since being dx and not the first one gave me a single phamplet or paper about the illness. It's almost like you have to dx yourself then tell them what to prescribe. You have found a good place here though, these people have helped me so much in 1 week. Blessed to have found this site.