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...
Hello everyone ! I am so happy I have finally found a site that is able to provide me with the support i have been searching for!! I am 24 years old and just recently got diagnosed with MG. I have tons of questions and i am hoping someone on here can help me with them. My first signs of MG were the droopy eyelids....on and off double vision and then my arms basically stopped working on me I could not even brush my own hair. I went through this for 3 months and finally decided to seek help. My neuro took one look at me and said he thinks i have MG. He ran my first blood test which came back negative for MG. Than he did an anti-MuSk test which came back positive. He put me 30 mg of mestinon 3 times a day Literally 3 days after my diagnoses i had a very difficult time breathing so I checked myself into the hospital where they kept me for 5 days for IVIG treatment they also put me on Prednisone. All of this really has seem to help improve my overall strength. Now i am on 60 Mg of mestinon 3 times a day and 60 mg of prednisone. Now here are my questions.
I still am having double vision almost constantly and droopy eyes i wear an eyepatch while driving or watching tv. Are these medications i am on supposed to be helping with my eyes? and i often get leg spasms but i am not sure if it is from the medicine or my MG. I also sometimes have chest discomfort again i am not sure if its because of my medicine as well. And also is there anything BESIDES Prednisone that my neruro can give me? My appetite is on 100% all the time and i am breaking out!! :( And i am curious if anyone on here still drinks alcohol I am really not a big drinker but i do enjoy going out once in a while and having a couple of drinks 2-3 max. If anyone can answer these questions i would greatly appreciate it! I will definitely have a lot more questions to come!
I still am having double vision almost constantly and droopy eyes i wear an eyepatch while driving or watching tv. Are these medications i am on supposed to be helping with my eyes? and i often get leg spasms but i am not sure if it is from the medicine or my MG. I also sometimes have chest discomfort again i am not sure if its because of my medicine as well. And also is there anything BESIDES Prednisone that my neruro can give me? My appetite is on 100% all the time and i am breaking out!! :( And i am curious if anyone on here still drinks alcohol I am really not a big drinker but i do enjoy going out once in a while and having a couple of drinks 2-3 max. If anyone can answer these questions i would greatly appreciate it! I will definitely have a lot more questions to come!
You are on a big dose of prednisone, but there is always a little weirdness when you first go on the drug -- you may get worse for a little bit! Other drugs including cellcept or imuran are both used alongside the prednisone in standard MG therapy.
Be careful with alcohol. We have the burden of having a disease that can make us "appear to be intoxicated." MG will hit you when you stress your body too much -- and you can just as easily stress yourself having a good time as you can by having a bad time! That was a big realization for me -- fun made me tired!
Good luck and know your limits! ~Joe
1.) You have a diagnosis, good news.
2.) You are getting treatment, good news.
Both items 1 and 2 above are issues most of us have had problems with at some time or another, so you are definitely ahead of the game and on the path to "normalcy".
The meds take time to work, but I'm predicting your eyes will be showing improvement soon. Also predicting your chest discomfort will subside.
Joe is right, the meds you are on help with the disease, but the side effects are difficult at times.
Has your physician discussed Thymectomy?
Take Care! Chris.
So many people here, have languished for years, because the MuSK test had not been run.
And so glad you were savvy enough, to get yourself into the hospital, when you had breathing problems.
Mestinon: caused me such pronounced overall muscle cramping, that I had to stop taking the drug. But I'm an exception.
Most people seem to do okay with Mestinon.
There will be lots of people here, who can help you with their own experience with Mestinon, hang in there, post again if you like.
Some of our members describe MG as being on a roller coaster ride.
Ups and downs, sometimes straightaways, sometimes steep hills or drops.
You and your Neuro will want to see where you are, on the roller coaster. Will the level of meds you are on, will they stabilize you? Then it's adjustments up or down, from there.
IVIG is very useful, but not long lasting.
Try to be patient with Prednisone, it might take weeks for the symptoms to be pushed back.
Talk to your Neuro about the Mestinon. Many people here, have neurologists who prescribe different dosages, for different times of the day, there is even a Mestinon Time Span, for night use.
You've hit a real rough spot, no question. While you are dealing with this, try to minimize alcohol. When I'm doing okay, I can handle a drink or two (insert punch line here). When I'm in rough shape, a drink causes my symptoms to develop all kinds of new angles.
The problem with MG of all types, and with alcohol, is that MG weakens your muscles, slows reactions, and can affect breathing and swallowing. Alcohol is a relaxant, so it would only make these sorts of problems even worse. Everybody's level is different, just be careful.
Keep us posted - Ross
If I'm not mistaken, your demographic (young female) typically responds very well to thymectomy, and the chances of remission are very high after having this procedure.
This disease will no doubt present a life-long challenge to you, but you are informed and ahead of the game, and your chances are good of beating back MG to where it still allows you to lead a semi-normal existence.
Exactly!
Omg I know how you feel! I remember being so pissed because I couldn't even fix my hair.
Also yes, because of prednisone my appetite blew up, I am hungry all the time. And I also have break outs. The ironic thing is I can't even go to a derma for a facial because of the prednisone >:|
I also get some chest discomforts once in a while so maybe it could also be the drugs? Prednisone has a looooooot of side effects yeesh.
I am getting a thymectomy in three weeks. My doctor thinks that the outcome is going to be good so yeah. If you could have a thymectomy I suggest you take it (but I'm not a doctor so yeah, you should talk to your neuro)
Wishing you the best of luck
Megan
the leg spasms might be a side effect of the mestinon. Prednisone does often cause heartburn, not sure if that's the discomfort you feel. I also sometimes have chest pain which I think is just caused by slouching due to general weakness in my core muscles, which compresses my ribcage or sternum (and also makes my back hurt).
also, I don't drink anymore because I noticed it made my symptoms worse. maybe now that I'm doing well I could have a drink every now and then without have an exacerbation, but since I haven't drank in years my tolerance is down to zero and I would be bombarding strangers with hugs and dancing terribly after just a few sips of beer. so. maybe better for me not to take that risk.
good luck with your surgeon! and I hope your eyes improve soon.
I also have the leg cramping and heartburn feelings from Mestinon, but I consider that to be minor, otherwise I do fine.
I have also come to accept the realization that I CANNOT drink alcohol. It just breaks me down and I spend days recovering to the level I was enjoying before I did some drinking.
Thank you for sharing your experiences with us. I learned more myself.
If I drink any more I feel it neurologically the next day.
oh well
Just doesn't work.
Being a neuromuscular disease I have enough problems.
You need to get stable before you drink anything at all. That is my advice. I quit everything for well over a year, until I could get stable. You owe it to your body to try to get well.
I have never taken Prednisone. You could do IVIG. That might help you immensely. Ask your doctor. Also, your amount of Mestinon is still not much, so don't worry about that.
Cheers from CA!
TJ