Neuro visit today....
 

I went to the neuro doc today and told him about the hand tremors, extreme weakness and and the twitching in my face. He made note of all that and did another physical exam and checked reflexes. I especially failed the part where he told me to put my chin on my chest, then resist by trying to raise my head while he held it down. I could not raise my head. He made me do it again and I still couldn't. Don't know what that means, but anyway he told me that even though my antibody tests were negative, I most likely have MG. But I found out that apparently, I did not have the single fiber nerve test, even though I thought that painful sticking of the needles into various parts of my body, and then told to flex those parts was it.
He is sending me to MCG (Medical College of Georgia) to have a single fiber nerve test then I will come back to see him a week after that. Although he is fairly certain I have MG, he wants to narrow it down and make sure that I do not have another disease.
He told me he hoped it was MG because for the other things that I may have, there is no treatment, and with MG there are treatment options and he feels he can help me. I agreed.
He still was not going to give me medicine until I asked him for it. I told him that I had been seriously scared by my symptoms and was alone during the worst of it and could not have driven myself to get help so I needed something help with the symptoms while I wait for the diagnosis. He agreed to give me mestinon but told me that I will have to stop it at least 4 days before the test.
I have taken two 60mg tablets today, and it may be wishful thinking, but I do feel somewhat stronger. Whatever works, weather real or imagined is alright with me. I have had no side effects other than about a five minute period of excess salivation.
Thanks for listening.
Linda

Glad the Mestinon is helping!

And just to reiterate....absolutely stop the Mestinon before the SFEMG as he recommended. It can throw off the test results and keep you from getting an accurate diagnosis.

Linda, I'm glad you have a doctor who realizes that MG is a clinical diagnosis backed up with testing. But, he's right, you do need some evidence from a SFEMG or a Tensilon test.

There was a study done by Dr. Howard of UNC that said the effects of Mestinon can last up to 2 weeks. Just saying. No, you don't want to go into a crisis but you do want to optimize the test results. Hopefully, the person doing the test will be very good at it.

That's all I had when I started Mestinon. I had a little increased salivation for the first dose and that was it! No more side effects other than it made me feel stronger.

You need to take it easy. The way you describe your weakness is concerning. Please don't do that thing where you think Mestinon makes you super woman! ;) It is counteracting the level of weakness you already have. If you do too much, you'll get weaker still. Remember that more (higher dose) isn't necessarily better with Mestinon.

I hope you get answers soon. Waiting is really hard.

Annie

Thanks, Annie for the good advice.
No, I am afraid my Superwoman days are in the past. My weakness is way too scary to want to do that again. Just between doses today was a bit unnerving. Hopefully, I will be able to get a steady level worked out before too long.