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...
It has been a long while since I visited this site. It was such a help when I was first looking for answers. I remermber meetng many who used to be her over lunch in Bulrington Vermont when I was there visiting my daughter. I have gotten along with 180 MG time released Mestinon BID and 60 mg. Pyridostigmine Q4w/a for years Then I had a 3 month flare where I would deteriorate quickly upon walknig about 30 feet with difficulty holding up my head up, inability to walk and slurred speech. This month I ended up in hospital for 8 days and was given 5 courses of IVIG. I actually had some improvement before going home but wa told in two weeks it would improve which it has. I was told to mainly rest and that within 4 more weeks the effect will stat leaving so I have to find another replacement for the IIVIG.
This is all new to me although I remember others here mentioning IVIG as a life saver. The hospital neujrologist mentinoed immuno suppresive drugs as a possible next step. I read on line you can self administer a subcutanous IVIG type of drug. Is there anyone out there who has opinions on what might be appropriate? I have lots of allergies and used a type of IVIg with no artificial sugars.
This site looks unrecognizable to what was here. Hopefully someone is out there!!
Yes, this site is no longer active -- folks seem to have gone to social media.
Sorry to hear you are having problems.
I came here 12 years ago when first diagnosed, had a bad year of MG and then went into remission which now has lasted 11 years without symptoms or medications -- and at age 78, I hope never to have it come back.
There are several new treatment drugs since I had it -- mestinon and prednisone were all I took.
MG is just a bad memory for me, but I do remember all the friends here who helped me through my bout. I sometimes feel guilty that I was so lucky.
Good Luck,
Russ Hanson
Im currently on a combination of Prednisone/time release 180 mestinon tablets and IVIG infusions every 6-7 weeks. If you can avoid Prednisone, ask your doctor for something else. When you take it long term, your body depends on it and it's not easy to get off.
In 2018, I had a severe crisis that really took a toll. It took 6 months for my body to adjust back to normal. One of my difference makers was IVIG. I literally went from wheelchair to walking in a few months. After getting rid of pneumonia (that was the base of why my meds stopped working), I got a few IVIG treatments and had improvements while going to an in house therapy center called Encompass. Once I stopped after I left there, I noticed symptoms coming back with droopy eye, fatigue, and hand grip weakness. I immediately asked by neurologist to put me back on and I haven't been in remission since.
What makes recovery tough is time. You want to do so much but nobody around understands. This board helped me with not being alone.