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...
Hi everyone,
I've been in an "is it MG or not?" cycle for over a year. My sleep doc referred me to a research respirologist and I saw him today for the first time.
What a wonderful appointment - a change from many I've had! He did a great history and looked carefully at 2012 lung function tests which showed "deconditioning" so everyone else just thought I was out of shape.
He showed me the rate of breathing graph. Instead of a gradual rise mine went almost straight up! I was at 50 breaths per minute when they stopped it because my heart rate was at a calculated maximum. He said it was stopped too soon to give the best information.
So he'll be setting me up with his research lab staff to do testing after about 20 hours off Mestinon, just before lunch. Then I'll eat and take m 60 mg dose and when it is working and I'm rested, we'll repeat the testing. I can't have one of the balloon in esophagus tests as the balloon is latex and I'm allergic.
He asked me all kinds of interesting questions "Do you notice you sigh a lot?". My Tai Chi folks call me The Yawner because of all the yawns and sighs! He asked if I was strong as a child. He thinks my confusion and dizziness with exercise is due to the respiratory drive telling my body to breath faster and I'm hyperventilating. He says it is due to respiratory muscle weakness, not anxiety, like a few, not-so-bright docs have suggested.
He also knows the neuro I'm waiting 11 months for (in Canada) and will copy him on the letter to family doc to try to speed up the next steps ie muscle biopsy to rule out other diseases and then,hopefully onto a real MG diagnosis.
Hard to believe I can feel relieved that it is likely MG after all. I guess I was worrying it was ALS, MS or worse.
So those in the diagnostic stages, keep on trying. There are insightful docs out there!
Flutebell
I've been in an "is it MG or not?" cycle for over a year. My sleep doc referred me to a research respirologist and I saw him today for the first time.
What a wonderful appointment - a change from many I've had! He did a great history and looked carefully at 2012 lung function tests which showed "deconditioning" so everyone else just thought I was out of shape.
He showed me the rate of breathing graph. Instead of a gradual rise mine went almost straight up! I was at 50 breaths per minute when they stopped it because my heart rate was at a calculated maximum. He said it was stopped too soon to give the best information.
So he'll be setting me up with his research lab staff to do testing after about 20 hours off Mestinon, just before lunch. Then I'll eat and take m 60 mg dose and when it is working and I'm rested, we'll repeat the testing. I can't have one of the balloon in esophagus tests as the balloon is latex and I'm allergic.
He asked me all kinds of interesting questions "Do you notice you sigh a lot?". My Tai Chi folks call me The Yawner because of all the yawns and sighs! He asked if I was strong as a child. He thinks my confusion and dizziness with exercise is due to the respiratory drive telling my body to breath faster and I'm hyperventilating. He says it is due to respiratory muscle weakness, not anxiety, like a few, not-so-bright docs have suggested.
He also knows the neuro I'm waiting 11 months for (in Canada) and will copy him on the letter to family doc to try to speed up the next steps ie muscle biopsy to rule out other diseases and then,hopefully onto a real MG diagnosis.
Hard to believe I can feel relieved that it is likely MG after all. I guess I was worrying it was ALS, MS or worse.
So those in the diagnostic stages, keep on trying. There are insightful docs out there!
Flutebell
For breathing problems, I use a CPAP, which when MG was worst helped me get though some of the most difficult breathing spells, and gave me some comfort I was going to be OK without heading to the ER. I used it in the day time if I had problems as well as at night. I think it helped me get by on less mestinon overnight.
Good luck
Welcome to the group. Sorry to hear you are diagnosed with MG, but getting the diagnosis and treatment started right away is great.
Most folks who have MG start mild and use mestinon, and then it gets worse and they take more and more, and finally have to move to something stronger that actually tries to stop the disease rather than just treat the symptoms, as mestinon (pyridostigmine) does. However, some folks are luck and don't need any more.
You should read up as much as you can about what the progression of MG is like so you will be aware of these changes if they happen to you.
. From positive blood test, starting on mestinon, in a few weeks I was in the hospital because I had breathing difficulty (just needed higher dose of mestinon). I took prednisone for many months to get MG under control and then tapered it down (and turned out to be on of the 15% who go into full remission without meds). I was 65 male when diagnosed and am 69 now.
I found reading a lot about MG online at the Myasthenia gravis foundation, webmd, Mayo Clinic and other hospital/clinic websites helped me understand what was happening. likely to happen, and the treatment etc. Made me understand things and that helped a lot.
Getting a good neurologist who has lots of MG patients helps and figuring out how to contact the neuro's team about changes quickly is very important. If you have more problems, you need to be able to ask about taking more Mestinon (some of us take 120mg ever few hours to function). Mestinon is like aspirin in that it takes effect in 30 minutes or so and wears off in about 3-4 hours -- no long term effect unless you take a time-release version.
Good Luck
Russ