Information on personal experience with MG (infection, health issues, doctor, muscle)

[cynwldkat]

My sister has been diagnosed with MG. Anyone know of anyone or has this disease? If so what has your experience been? Any information will be greatly appreciated.

[Keeper]

Are you asking about Myasthenia Gravis?

[cynwldkat]

Yes! Thank you for writing it out for me. I should have. Guess I'm not thinking clearly at this moment as I am very concerned for my sister who lives in CA and I am in NC. She was diagnosed about 5 months ago and has had little luck with their treatments. It's pretty scary. Her husband just informed this morning that she is once again back in the hospital. That's 7 times in the last few months. I'm just curious if anyone can tell me something positive regarding any treatments with this disease.

[Keeper]

I can only tell you what I learned about MG from my husband who had MG when he was a teenager. He underwent a Thymectomy and was on medication until his 20s. He was lucky that treatment cured his MG.
I know several people who have MG, one person only has his vision impaired, the other had many other problems. Roger Moore (the actor) has had MG for many years so there is hope.
I would suggest you check out these links for more information on MG and treatments. If they aren't helping her the myasthenia org might be able to direct you to a doctor/hospital that is more experienced in treating MG.
MGFA
Myasthenia Gravis Information Page: National Institute of Neurological Disorders and Stroke (NINDS) (http://www.ninds.nih.gov/disorders/myasthenia_gravis/myasthenia_gravis.htm#Is_there_any_treatment - broken link)
I hope this helps you. If I can give you any other info please contact me.

[cynwldkat]

Thanks. I am feeling soooooo far from her right now!! She just had the Thmetomy a month ago but that has caused the staff infectoin she is now fighting. Just seems like it's one thing after another. Guess it will just take some time to get it under some kind of control. She is in Loma Linda University Hospital in CA....supposedly one of the top hospitals in the country. Just needed some positive input and you did do that for me. Of course I still worry about all these other complications.

[Keeper]

It does, my husband had the thymectomy when he was around 14 and it took a while before his symptons were gone. Please realize this was many, many years ago and treatment has improved since then. He didn't quit taking his medicine until he was in his mid 20s, without approval from the doctors.
A staff infection while serious happens to patients without MG.
My husband lived a very good life, lifted weights, had children, sailed our boat and worked full time, with no further health issues from MG, so there is hope for your sister.
My thoughts and prayers are with you and your family.

[cynwldkat]

Hey Keeper, I just read an artical online regarding Walt Disneys character "Sleepy" of Snow White and the Seven Dawrfs. Sleepy was developed for a friend of Walt Disney who had MG. I have been doing a lot of reading and research and a lot of praying!!

[Six Foot Three]

Just ran across this article abiut a clinical trial thats showing promising results. Here it is for those interested.

ScienceDaily: New Treatment Boosts Muscle Function In Myasthenia Gravis

[cynwldkat]

Very interesting. I'd all but given up any hope to get more replies. At this moment my sister is having a Myasthenia Gravis crisis---she is on a ventilator and is living day by day. It's tearing me apart piece by piece so thank you for taking the time to give me more hope!!

[cynwldkat]

The medication my sister is currently using doesn't seem to be working as well as it was at the beginning so I have sent her husband this article so perhaps he can ask the Dr.s about this medication. Thank you for taking the time to post this for us. We are getting pretty desperate at this point.