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...
Well, I just finished my fifth plasmapheresis treatment. Unfortunately, no improvement. pred is up to 80 mg along with the mestinon timespan. been in the hospital 8 days now this syay.. I'm waiting for my doc to let me know if I'm going to go home or be transported to another hospital tomorrow. Did IVIG 2 weeks ago with no effect. In retrospect, it seems like I may have had congenital myasthenic syndrome. I'm seronegative, but have positive emg which could be for either diagnosis. Want my doc to do the gene test for cms, but she is unwilling at this point. Afraid to go home and have to come back have been in hospital all but 3 days in April! Any advice?
This information is on MDA.org under diseases.
This is an excellent summary linked in our Links Member Group on Congenital myasthenia (page 3).The second link to myasthenickids is not working right now, but I will try and chase it down. b.
http://myasthenickids.org/wp-content/uploads/2013/01/CMS-Print-Web-Version-2.pdf
My myasthenia is familial, but autoimmune and responds well to immunosuppressants. I hope you will find this information helpful. b
Hate to say it but I was in hospital for a month and I am up and kickin
I was down for so long, in the hospital in March and family glad to have me attend 4th of July celebration.
It takes time.
I didn't see immediate results from plasmapheresis I had to do ivig because I got pimonia (can never spell that). I question wether either worked. I couldn't move at all for about 2 weeks or more and on ventilator.
Only sharing to give you hope.....it takes time.
I read your topic, re: CMS - Congenital Myasthenic Syndrome.
Along with everyone's great postings: links & thoughts.
It does sound like CMS, doesn't it?
Especially with the non-response to MG meds.
As my Mom says to me " patience is virtue " easier said than done but good thoughts to keep close to you .
Get well soon , Cj
Hugs
Sherry