Wow thanks. You sure know how to make a sick person feel better. I can't get disability. I don't have enough earned credits for SSD and my husband is on disability and they say we make to much for me to get SSI. I have heard of a federal program to get insurance but it cost around 400 dollars a month. I guess I am stuck in the middle.

BARBARA - HAVE YOU THOUGHT ABOUT GOING TO A RESEACH NEURO? TYPICALLY DR'S TREAT MS WITH IVIG AND SINCE THEY ARE RESEARCH DR'S, THE AMOUNT OF IVIG IS ASTOUNDING - AS WELL AS THE PRICES......ABOUT 3/4 LESS THAN IVIG IN THE HOSPITAL....YOU MAY WANT TO ASK AROUND - IT JUST MIGHT BE WORTH IT! IT MAY SEEM LIKE A TYPO WHEN I PUT MS, BUT THERE ARE SO FEW DR'S WHO ACTUALLY DEAL WITH MG THAT MY DR IS RESEARCHING MS, NOT MG,, BUT GETS THE JOB DONE.

YOU STATED EARLIER THAT YOU HAVE AUTISM IN YOUR FAMILY? I'VE GOT 2 COUSINS THAT ARE NON FUNCTIONING AND NEED TO WEAR DIAPERS - @ 24 AND 17 - I WONDER IF THERE IS A CORRELATION?

BIG HUGS!
ERIN

Barbara,

You sound like an amazing and strong woman. It also sounds like your body is asking for rest, so please take some time for yourself. I'm not a doctor, but the amount of steroids you're on seems very low. Perhaps asking your doctor about an increase might do wonders. I'm on mestinon 30 mg 3-4 times a day and 25 prednisone daily. I just reduced from 30 about 2 weeks ago and am back to feeling the weakness of pre-meds for my MG. The steroids have been amazing for my stamina and ability to do things.

Best wishes to you.

Hey Barbara, You are an amazing and brave worman. I will pray for you always. I have been diagnosed with MG in July after a series of test. It is in my eyes right now i have the droopy eyes and double vision. Is that what you had before it went into your body? When did you start feeling the weakness in your body? I am feeling shortness of breath and sometimes have a hard time swallowing. The tiredness is really bad i just don't want to do anything but sleep. I am also on an antidepressent for depression and anxiety. I take mestinon and nothing else. My neuro wants to put me on prednisone so i could feel better. I have diabetes and it is very controlled. I heard that pred and other meds make blood sugar go sky high. I work P/T 2 to 3 days @ 6 hrs and when i get home i'm pooped. I think about how long before I feel the full affect of MG. My neuro said if i go on pred that my MG can go into remmission. I just don't know what to i want to do.
I wish you all the best and hope you get the medical care you need.

Pred will make your blood sugars go sky high. They can also make a pre-existing condition worse.

Mine started in my right eye, then couple months later it hit all my muscles.
I started on 180mg of mestinon. Then added a high dose of Pred. that shot my blood sugars up but it was a 3 month treatment but it put me in the hospital for 5 days with Diverticulitis. No more Pred for me. I have had 3 IVIG treatments. I am currently taking 60mg of Mestinon 3x a day and 1 180mg time release at night. I also take 200mg of Imuran a day. I have lost 35 pounds but I'm finally stable at 145lbs. My double vision has cleared up about 80% still have a little looking down or far left. I went 11 months without driving but I can drive now but have slowed down a lot.
Mike