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...
I went to the dr on Monday. She was Fabulous! Dr. Simpson was completely thorough and comforting. She believes I have MUSK MG. Not sure what all that entells, but I am trying to do some research. The dr had me do more lab work, pulmonary test and I do my EMG tomorrow....pray for me. I am waiting on another (sigh) referral for a sleep study, that should be fun!
Dr Simpson prescribed me Mestinon, which Ive been a bit scared to take. But I've taken one dose thus far and will continue. My breathing is so labored it is frightening, Hoping the Mestinon helps with the breathing and other issues.
If anyone has any information regarding MUSK I would love to hear about your symptoms, what makes you feel better and your treatment.
Thanks to everyone for your support!
Dr Simpson prescribed me Mestinon, which Ive been a bit scared to take. But I've taken one dose thus far and will continue. My breathing is so labored it is frightening, Hoping the Mestinon helps with the breathing and other issues.
If anyone has any information regarding MUSK I would love to hear about your symptoms, what makes you feel better and your treatment.
Thanks to everyone for your support!
read about preparing for emgs in the links group. you need to stop your Mestinon if you can without danger. musk positive MG is a problem with the endplate of the muscle and tends to be more severe than achr positive MG. you might want to read the overview of MG on the second page of the links group. i just wanted to let you know there is a way to prepare for emgs that is more likely to give you a true reading, before I am off to bed. good luck tomorrow, b.
So glad you like your neuro!
I'm sure by now you have found this info in your research--from what I understand, mestinon for many MUSK+ can make symptoms worse. If the mestinon does not help your symptoms or makes them worse, call your neuro.
Plasmapheresis and rituximab seem to work for many MUSK+.
Good luck with your testing,
~sherry
Kimber
Karla ask your doctor about the Mestinon again because. I was diagnosesd with MG this spring and have been taking two 60 mg pills four times a day. Now Thanks to everyone on this site I was able to see someone just yesterdayfrom the head of the MG board in Chicago and she is checking me out for Musk MG. Since being on Mestinon my breathing has been worse. The prednisone has made a world of a difference in 24 hours.
Thanks for posting about this topic!! I want to stay tuned to see what you find out! I hope you get relief soon...
I previously had the EMG, SFEMG, blood tests (which turned up with missing data). My neuro thought I was positive for one thing on the blood antibody test and started me on mestinon back in June. But with certain symptoms not improving or worsening he referred me to a so-called MG specialist. So mainly due to missing numeric values for the blood tests, my diagnosis is currently in question... Most recently have undergone the same tests as you: sleep study, saw a pulmonary doc for pulmonary function test, and had more blood labs. The specialist had me scheduled for some MRI's, but those got cancelled bc of my insurance for some reason (have to find out why). I've been having respiratory problems fluctuating for weeks, and thankfully I see my regular neurologist to follow-up. REALLY hoping for some answers... maybe a diagnosis confirmed, and some treatments that work for me. Because of your post and responses I am going to ask about the MUSK MG, maybe that is something that hasn't been explored for me yet but would make sense given the severity and fairly chronic state of my MG symptoms. I'll let you guys know how it goes... and Karla, keep us posted. Wishing you the best of luck!
Also, hope my other MG group friends are doing well. =)
*Aimee*
I will keep you posted as I get my results on Friday. Wishing you all a great rest of the week.
-sherry
Early on when I first found I had MG, my hospitalization was because I wasn't taking enough Mestinon to help the breathing--had to take about 90 mg every 3 hours to get relief. My neuro gave me a prescription to take it as needed up to a maximum of about 600 mg per day. Some days I needed more, some less, until prednisone took effect and decreased my need for mestinon totally over the past month. If mestinon isn't working possibly you need more, or maybe it doesn't work for you. Generally, if you have MG, it does help greatly.
http://www.ncbi.nlm.nih.gov/pubmed/19882635
..."This survey reinforces several cardinal features of MUSK AB positive MG. These including prominent bulbar involvement and unresponsiveness to anticholinesterase inhibitors "... It goes on to say the best response was to corticosteroids and plasmapheresis.
-sherry
I found that in a research study, almost 30% of those folks were hypersensitive to mestinon (pyridostigmine) vs much lower for non MuSK positive folks. That means that the first time one tries mestinon, one needs to be careful!
the study notes:
"This hypersensitivity was manifested by severe muscle fasciculations, especially in the ocular and facial muscles, blurred vision, hypersalivation, and abdominal cramps. In anti-MuSK negative SNMG patients, hypersensitive response to pyridostigmine was observed in only one patient (2.6%) Owing to hypersensitive response to pyridostigmine, all these patients were treated with very small, divided doses of 1030 mg at every 48 hours."
The mestinon seemed to work, just some folks needed much less then normal dose of 60 or 90 mg. I think this indicates that doctors should give us a very small dose (say 10 mg) first time just to make sure we aren't hypersensitive; and that if it is MuSK MG, that is, in this study, likely to be 30% possible.