Hello everyone...My 23-year old brother was just diagnosed with MG in November 2008. He was started on Mestinon, and a chest CT revealed an enlarged thymus gland. He had thymectomy on 2/2/09. He did well, and was d/c'd home on 2/5/09. He started having issues swallowing, and choked on food. He was readmitted on 2/13/09, and thought to have had a cholinergic crisis. He did well and was d/c'd on the Mestinon and Prednisone 10 mg. He started having issues again with difficulty eating and swallowing, and was readmitted on 2/23/09. The neuro decided to start high-dose steroids, but instead of improving, he got worse---weaker and weaker, and has now weakness in arms and legs. He couldn't even hold up his head and walk! Neuro tapered the steroids and he got 2 rounds of IVIg. It's been 2 days since the last IVIg, and showing a little improvement, but still weakness in arms and legs.....how long did it take you to feel improvement after IVIg? I just my brother to get better! It's ben so frustrating!!!

Thanks

I am so sorry your brother is having to go through this.....MG is really, really scary!

I was started on roids when I was in the hospital, b/c I was told that they can make you really really weak initially. I was on Mestinon, but it wasn't enough. I still had a crisis.

When I started on the roids, my legs were really weak. I got stuck outside (after I was released from the hosp)........

it does sound like you need someone who will keep a closer eye on your brother. Have the docs recommended a thymectomy? Is he still in the hospital?

Please feel free to contact me anytime! erinhermes@hotmail.com

Erin

Hey how are you going,

It must be a very scary time for you all at the moment.

When I was started on pred, I was hospitalised, as often when starrting on steroids you can get MUCH worse, before you get better. Has the neuro said if he will try any other medications??

Usually afte IVIG take about 4/5 days to start begin feeling a biit better.

I hope things start iimproving forr him.
take care

Hi Matt's Sis,
I have just recently had to start meds again, and can tell you the Prednisone is making me weaker as it can at first. IVIG didn't work for me when I was dx'd in 2004, and the thymectomy can take from 3-10 years to take full effect.

I wonder if your brother is expecting too much too soon because of the need for the return trips to the hospital. None of the meds/treatments are "magic bullets" that will allow him to return to even semi-normal activity right away. The big thing about this disease is understanding the mechanics of how it works. The more active you are, the fewer receptors you have on your muscles to make them work, and when you use those up, the body is attacking the mechanisms that make muscles work so they are not being replaced quickly enough.

The hardest thing for me to get through my head was how much is too much. Compared to my old, hyper, work-a-holic self, when this disease is active, just walking around the house too much, reading too long, even sitting upright very long is too much. Your brother probably needs some help in defining what is too much for him (for now), and then needs to know that the limits WILL increase as the meds/treatments and rest start working. But it takes a LOT of patience. I really get to feeling worthless and burdomesome if I'm not real careful (that makes it worse too). That's where family and friends can help.

I recently read a book called "Beyond the Limits of Myasthenia" by Clete Gress. He had Myasthenia for 50 years +, and had to figure alot out on his own due to lack of proper medical professionals available to him. It really helped me to understand how to put limitations on myself to allow me to be the best possible. My last go around, I bucked the disease to the point that I was my own worst enemy. The book is free online, print, download or just read it there. It may help you help your brother.
http://www.beyondthelimits.net/book.htm

Best of luck to your brother and your family. Let me know if you read the book and if it helps him or you.

Becky