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...

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Finally diagnosed!!

gonegirl3
gonegirl3

It's been a struggle and not sure how I feel but my sfemg was positive for MG. I've waited so long for a Dx. I currently am on the mestinon (which was started prior to the sfemg due to breathing issues). I meet with my neurologist next week to discuss treatment plan and what's to follow. Any advice? Questions I should ask? Treatments I should expect? Any further testing? 

Rhanson
Rhanson
It comes as a relief when we finally get a diagnosis for what ever ails us!
The most common starting treatment is mestinon only. Then if that is not enough (or mg is progressing), we get some kind of immune suppressing treatment. Most common is prednisone first to get rid of most of the mg symptoms, and then tapering and if prednisone is a problem with side effects another one of the immune system drugs.
Prednisone is used because it is fast to control MG. If we are really in bad shape, IVIG or PLEX is used -- directly altering the blood.
You need a neuro with experience in mg to guide you through this.
Good luck Russ
MGgotme
MGgotme
Rhanson is right on all counts! I have had MG for 17 years, I am 57. I am a guy. Looking back the one thing that kept me sane was my support groups. Please go to MGFA http://myasthenia.org/Login.aspx. Also, MG is a Muscular Dystrophy Association disease. Please go to https://www.mda.org/. Their is a great online support group that I loved when I was first Dx https://groups.yahoo.com/neo/groups/maddysmgsupport/info
Please find a group that you can attend in person. Even if you have to drive an hour or two. I have a group that my wife and I run in North Carolina. If you live in North Carolina let me know.
neon07734
neon07734
Great information at the websites listed above. I would also have a scan done to check for a thymoma. If you are lucky enough to have one, once removed, it may help eliminate some if not all of your symptoms. When I was diagnosed I had to push for the test pretty hard and I was lucky enough to have one. I had it removed two years ago and while not all symptoms are eliminated I feel much better than I did prior to Laparoscopic surgery.
gonegirl3
gonegirl3
Thanks for all the information!!! I live in PA. Currently traveling to Pittsburgh for specialist and also have a neurologist locally. I had scheduled myself an appointment at john Hopkins as well way prior to Dx. At this point I will keep that appointment and then decide whom to go with. Second opinions are always good, right? I
I will definitely check out the above groups!!! Thanks!!!
Resilient
Resilient
I am in PA also (Lebanon) and I see all my specialists at Penn State Hershey Medical center. That was my second opinion and where I was finally diagnosed. I was offered John Hopkins but never had the strength to make the trip (but a very good option). Glad to hear you are finally getting help/treatment.
neon07734
neon07734
It's imperative that you see a good nuero doc. I live near Albuquerque NM and I'd drive 7 hours to get myself to Denver, for adequate health care. In the beginning I had an appointment in Denver colorado with a nuero doc and an Appointment in Phoenix Arizona at the Mayo Clinic. A second opinion is a great idea!!!