Comments on: June is Myasthenia Gravis Awareness Month

By: Nicole

Nicole — Sun, 15 Aug 2010 08:06:09 +0000

I was born with Myasthenia gravis (1980). I’ll keep my story short.
I did not have the thymectomy and did not take medication until two years ago.
My little sister was born with MG too (1986), it effects her eyes more so. My limbs, eyes, swallowing, chewing and even breathing is weak but I am in grad school studying art therapy and hoping to work with others with Myasthenia gravis.

Take care!

By: Freya Koss

Freya Koss — Mon, 29 Jun 2009 20:28:58 +0000

I was diagnosed with MG in 1998. I recovered. Please read my story athttp://www.toxicteeth.org/forms/
mainLineToday.pdf…[message truncated]

Freya Koss
PA COALITION FOR MERCURY-FREE DENTISTRY

By: Elyse Bruce

Elyse Bruce — Sun, 21 Jun 2009 21:31:35 +0000

I wanted to update people now that we’re 10 days past the surgery.

Lewis is healing well but is still pretty wiped out by the surgery itself. His MG symptoms are still very active however it could take up to 2 years for MG to go into remission after a thymectomy if it’s going to go into remission.

He’s storyboarding his next video which will chronicle the before life and after life of going through major surgery. The focus is on making surgery a less frightening event in a child or teen’s life than it was for him.

You can’t help but love a kid that thinks about things like this and then creates ‘em.

By: Valerie

Valerie — Sun, 14 Jun 2009 06:03:54 +0000

Lewis – it will be okay. I was 18 when I first came down with myasthenia gravis, and after six months of wrong diagnoses and nearly dying, I finally forced a doctor to run the blood test. From then on it was a whirlwind of medicines, crazy side effects, and thymectomy. It was all really confusing and scary at the time, because I was so young and pretty much medically illiterate.

I am now 24 and have had MG for six years. Honestly, don’t put all your hopes on the thymectomy. Only now are they conducting the first controlled study, and so right now there really isn’t much reliable evidence in the literature that this is truly an effective procedure. Keep in mind there are a lot of anecdotal success stories floating around on the internet, but these have to be taken with a grain of salt. But it will definitely give you peace of mind that you’re doing everything you possibly can, because otherwise you’ll probably just wonder “what if” forever and ever. Be very careful after the procedure, because my surgery actually exacerbated the MG (as will any kind of severe body stress).

I can really relate to this article, especially when describing how depressing it is to not be able to express your personality. I’m a big talker and pride myself on making sarcastic comments, so losing that ability has always been devastating. But it always comes back eventually. I have been on Cellcept for a long time and it seems to have been pretty good at keeping the symptoms at bay. IVIg works well too, although it goes away after a month. And avoid ANYTHING that riles up your immune system; always get flu shots, stay away from sick little kids, etc.

Because of all this craziness, I graduated from college with a degree in neuroscience and will be attending medical school soon. I still have never met another MG patient, although I’ve gained so much knowledge about the disease over the years. If you ever have questions, feel free to email me! Good luck! And always remember – the symptoms are reversible. It sucks, but we are really so lucky to have such an easily treatable neuromuscular disease. Stay strong – mentally, if not physically.

By: ConnieFoggles

ConnieFoggles — Sat, 13 Jun 2009 07:08:46 +0000

I’m sorry that I didn’t get to see this earlier. Please send Lewis my best now that he is recovering from his thymectomy. I hope that this will ease the symptoms of MG for him.