I loose my voice usually when I am on the phone. I find myself talking but no sound comes out. The harder I try the worse it seems to get. Asfor the muscles, at times they seem to do little dances. My oldest gran daughter first commented when she was 6 yrs old. I had a long sleeve T Shirt on and she insisted that I had a mouse up my sleeve and it was running from arm to arm. Another thing that happens to me is sometimes I forget basic things like names etc. It usually last for a couple of minutes. ( The doctor tells me its MG related).

SMART doc you've got there!!!

Thank yall so much!!! and welcome Seamus! I appreciate yall's replies so much! I just had my first IVIG maintence dose today.. we'll see how it goes - I got 30g which I was told at the infusion center that that's not a very high dose, I am about 125lbs.. so we'll see I sure hope it helps! My swallowing seemed to have gotten worse the past couple of days.. good times!

My daughter got her first IVIg treatment about three of weeks ago. She received a low dose of 0.4 g/kg/day. She is 160 lbs so this was 29 g of IVIg per day for 5 days. I've read that 2 g/kg/day is often given for an initial dose though. It appears that you got a dose between these two dosing levels.

To figure out your weight in kg take your weight in lbs then divide by 2.2. For example, to calculate a 0.4 g/kg dose you would do the following:
125 lbs. / 2.2 = 56.8 kg X 0.4 = 22.7 g of IVIg

Sarah

I'm not going senile then. Thank you I was on the phone today talking to a specialist at the hospital re an upcoming appointment I got off the phone and promptly forgot the date of the appointment

3 weeks is EXACTLY when IVIG wears off. I've also been having this problem of hoarseness with my voice, much worse lately. I simply can't talk on the phone much or talk much at all, I get hoarse very quickly and the hoarseness very soon leads to shortness of breath and breathing issues that will last for hours....but that has been going on since before I even knew I had MG.

Seamus,

my memory has also been effected by either the MG or the Cellcept. I don't which has been the cause. I can forget things in an instant. I have been on Cellcept for five years. I assume its the result of taking the Cellcept. but I'm not going to get off the Cellcept to verify my theory that its the Cellcept causing my problems. I didn't have these memory issues before my journey with MG began.

Along with the memory issues i feel a slight mental grogginess most of the time. Like I want to just rest for a while. Usually when I can get out and walk for awhile the grogginess diminishes. So don't feel like your all alone with this issue. I'm trying to figure things out myself.

thanks