Hi everyone, I posted here this past summer. I'll try to link to that thread, so I wont have to repeat everything.
http://neurotalk.psychcentral.com/thread125873.html
So, here's an update. I am still waiting to see the neuro, but in the meantime I started with a new PCP. This doctor is amazing! I told him all of my symptoms droopy eyelids, difficulty with repititive task, difficulty writing, difficulty chewing, weakness in arms and legs, and at times a feeling as if I'm completely out of energy. During these times I have a hard time talking or breathing. Usually if I rest I'm ok.
So, he said I'm positive you have MG. Even if your blood tests come back negavitve I want you to take it. I think one of them was borderline at one time. He said that sometimes the levels can fluxuate. I have had a complete work up for everything else.
After I saw my eye doctor in the summer I called my current neuro who is three hours away (the reason I'm trying to find a local one to work with me). I asked her about what she thought about the trial of Mestinon and she said I should do it.
I guess I'm worried that when I see my new neuro that he will say I don't have it. I've fought so hard to get a diagnosis and some treatment. Of course I don't want the wrong diagnosis. I'm guessing that if I'm still repsonding well to the Mestinon he will keep me on it.
I'm going to try and attach a pic of my before and after taking Mestinon pics. Excuse the grey hair and old lady look. It was just a few days after Halloween afterall.
I do think my eyes looked better and my breathing was better too. The doctor wants me to take 60 mg three times a day, but I'm sort of ramping it up myself as I'm a worrier about meds since I've had allergic reactions in the past. I'm taking 30 mg twice day for a few days then I'll go up. Is it possible that that amount could help me, or do most people need more?
Thanks.