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...
Hi. I was diagnosed with MG about a month ago. This is all new to me as I amentioned sure it is for all. I was shocked when they told me that my infusions would be everyday for 5 days. I guess I thought I would just go in and out in one day. MG has not effected my legs or feet, just neck pain, double vision, arm strength & a little problem with drinking & eating at times, but since being on pyridostigm 60 MG 3x aday, now on. 4 a day, it has helped a lot. I start IVIG on monday. Can anyone give me any info I should know before beginning. They are already talking about thymectomy via sternum apprach. I am not 100% convinced that is the only way to go. I am trying to find out if I qualify for robotic surgery now. This rare disease has me pretty scared. I have been relatively healthy my entire life and to diagnosed at age 60 is not what I had planned for my older years. Thanks for listening and I look forward to hearing from you.
I am recently diagnosed also. Also on Pyridostigmine 60mg and Prednisone. Everyone has different doses depending on their Neurologist. There are different options for treatment and they should also be explained to you.
Look on the web: UK sites, USA (different states) have a few MG sites. Mayo Clinic and general searches regarding diagnosis, treatment options. Australia also (I am in Oz).
From what I have read ... each person is unique. I have been keeping a diary of changes since May so that I can inform my Neurologist of my progression over the weeks.
Make a list of questions you want answered. Read!
All the best and keep us up to date
Welcome to the group. Hope your MG treatment works good.
IVIG has shifted from being an emergency treatment for folks in MG crisis to more of a first-line treatment at the beginning of MG if you symptoms are serious. It does work although it has to be repeated monthly.
Many insurance companies won't cover it unless you are in crisis as it costs about $20,000 US for each monthly treatment. I think some of the reason for the IVIG treatments is they are a high profit item for clinics and hospitals.
I didn't want a treatment that tied me to being in the hospital every month, so chose prednisone at high doses to get MG under control (took a few months) along with taking up to 8 60mg Mestinon a day -- I took it as needed like aspirin for a headache.
Very few folks end up with IVIG as their ongoing treatment, so you really need to get another immune system drug underway too, so getting a life strategy for dealing with MG won't be delayed.
Good Luck
Russ
Good luck and God Bless you. If I can be a source of support and or information please let me know. I know having the Daily Strength support group has been a saving grace for me on my MG journey.
I suppose to go see granddaughter for thanksgiving and trip to Hawaii in January then surgery when I return. Video-assisted approach. Im miserable. Any ideas.