If I see another neuro about MG then I plan to not take Mestinon for at least 24 hours beforehand, maybe 48. I consider it a big mistake that I took Mestinon last time, although I just think that doctor sucked anyway.

I'm thinking I could offer to demonstrate how much Mestinon helps my strength. If they are willing to give me enough minutes of their time. They could examine me and then leave for 20-40 mins while Mestinon takes effect, and come back and check me out. I think that would be like a mini Tensilon test because it benefits me enough and acts pretty fast on me since I'm sensitive.

One thing I can't decide is maybe I should go in extra tired. Like do some physical activity that morning and/or the day before. Muscles would appear weaker for sure. BUT if I do much physical activity then the Mestinon won't work much and I can't do Plan A. But that would probably be better if they were willing to give me real Tensilon, to see more contrast, see one of my weaker states.

Just wondering if anyone had comments on this.

Hi Wondergirl,

its me again. I haven't been on for a while so I am not familiar with your history but I am guessing you are in the disgnosis hell I am in. I am without a diagnosis for the last three years and have been dropped by my neurologists. I am allowed to continue taking mestinon as it "makes me feel better".

I think that the Tensilon test is the way to go- I doubt that they will believe your mestinon results as neurologists like to have clinical data, and you may be subconsciously making your symptoms go away after you have taken the mestinon. You may think thats explanation is nuts but believe me Ive had it thrown at me.

Stay strong and continue to believe in yourself.

Rach

Hello Wondergirl, I haven't been on in a few weeks, but your post caught my eye. I'm in the process of being diagnosed and it sounds like you are too.

My eye doctor wants me to start on Mestinon on a trial basis to see how I respond. My tests thus far have been negative, but I do have ptosis, muscle weakness on exertion, shortness of breath, and difficulty chewing. Anyway, she has referred me to a neuro, but I can't get in until September. If you don't mind me asking, who put you on the Mestinon? Was it an eye doctor or a neuro? Have you had any positive test results?

I have heard of people going to the doctor after fatiguing themselves. In fact, in the past, I tried it myself. At this point, I don't believe I could safely do that though. I mean, my symptoms have progressed so much that I'd might take a while for me to recover. So, be careful if you are considering that.

Good luck.

Shalynn - That would be great if you can try out Mestinon. I got it from my doc I see for Fibro but only because of what one neuro said (he said I have unspecified autonomic problems). I hope things go well with the doc in Sept. That's next month.

That reminds me... when I am fatigued, people usually take one glance and me and decide I am just depressed Sometimes I am a bit depressed also but it's mostly that when fatigued, it's harder to talk, and my voice is lower and slower. And harder to do facial expressions as much, mouth and face will look glum.

Rach - I am certain that most docs don't know enough about MG and they think it has to be extreme. I don't know if I am going to seek the diagnosis more or not. Mostly I wish there was something better than Mestinon even though I'm grateful for it. Tired now so I don't know what to say... Maybe thymectomy or other stuff is better for those who get diagnosed.