Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Where are you from?

cgreens
cgreens
Hello everyone.

I am TJ and I am from CA and on Cellcept for treatment. I have generalized MG, and I have done IVIG ending the beginning of this year. I also take Mestinon every 4.5-5.5 hrs and Mestinon timespan 3X a day incl bedtime. It seems to me that I don't hear from many from my state, so in case I am wrong, or just to hear from y'all, I would like to hear where you are from and what you have been prescribed for your MG. I am wondering if treatments are subject to the area we and our doctors are from...

Thanks and look forward to hearing from you all, and of course I wish us all the best of health and peace in life.

TJ
deleted_user
deleted_user
HI! I am from Fort Worth, Texas. I was diagnosed last July and had 1 1/2 months of symptoms before diagnosis. I am a RN. Planning on having a thymectomy this upcoming thursday.
catnap2
catnap2
Xaf, you are just down the road from me! I'm in the Dallas area. Welcome neighbor!
Cathi
deleted_user
deleted_user
Hi TJ I'm brittney and I'm from MA I was diagnosed at 21 and have been tryig to find the right combination of medications to help keep my MG under control... Right now I'm on imuran 200 Mgs prednisone 20 Mgs and mestinon if any symptoms occur. I've had IVIG twice an it seems like it's ok right now. I work with a local dr. At mass general in Boston! Hope everythings going well for you hope to hear from you soon
Jules3391
Jules3391
I'm from Victoria, Australia. Had thymectomy soon after being diagnosed. After two years changed Neuros and went on Mestinon Timespan. This worked for a while but I no longer take it. Don't see a Neuro at all now as can't seem to find one that actually knows much about MG. Will keep looking but don't hold out much hope. Symptoms are double vision 24/7 and weak arms, etc. Nice to meet you all.
cgreens
cgreens
Brittney and Jules, a pleasure having you in our group. Thanks for sharing.

Looking forward to hearing from you and the hopefully future successes you have with treating your MG to find peace in your lives.

Best wishes,

TJ
Posts You May Be Interested In
  • deleted_user

    allergies!

    Posted by: deleted_user
    Last Reply: acuriousfish
    4
    This isn't really bipolar related but there is never anyone on the parenting groups, this is the most active group I've been in.My 6yr old son has really bad seasonal allergies and they're in full force right now. He gets a terrible cough; he coughs all day and all night, making it hard for him to sleep, and his nose runs.I've tried every allergy medicine, OTC and RX, and none of them affect his...
  • deleted_user

    Diamox allergies?? (Sulfa Allergies)

    Posted by: deleted_user
    Last Reply: Iafaforallergy
    3
    Is anyone here allergic to Sulfa that is currently taking Diamox? I have been diagnosed with IH now for almost 2 years. I am allergic to Sulfa drugs meaning that my throat will swell up so my Neurologist put me on Topamax. I was suffering from major loud whoosing noises and the topamax helped that but everyday I still hear those mainly between 6 - 12 pm. I am at my wits end and have not went...