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 have some good news !
After working with my neuro for just over one year, he seemed to run out of options to treat my MG. Prednisone, Cellcept and IVIG have had little effect. He started me on Imuran about 6 weeks ago. Only 90mg of Mestinon 4x/day allows me to speak and swallow.
He referred me to the Stanford Neuromuscular Clinic at the Stanford University School of Medicine in Palo Alto, and I'm really glad he did!
My first visit today was with the Chief of Neurology (MD and PHD). He was joined by a fellow doctor specializing in MG research, a Nurse Practitioner, the on-site Pulmanologist and a representative from MDA. (MDA offers support to MG patients and funds this clinic.)
For the first time I felt I had a real team dedicated to helping me get better or at least keep MG from ruining my life.
Needless to say they are taking an in depth look at my condition and are working on a sustained treatment. They have already diagnosed some previously undetected symptoms.
A new sleep study has been ordered as my CPAP may actually be obstructing my breathing at night. Seems that the constant air pressure may be putting an unnecessary strain on my diaphragm when I exhale. Perhaps a BiPAP machine which uses two different air pressures may help my situation.
I feel fortunate to live close enough to such a great specialized clinic.
Good thoughts to all. And don't give up hope; there really are good people dedicated to helping us cope with MG.
After working with my neuro for just over one year, he seemed to run out of options to treat my MG. Prednisone, Cellcept and IVIG have had little effect. He started me on Imuran about 6 weeks ago. Only 90mg of Mestinon 4x/day allows me to speak and swallow.
He referred me to the Stanford Neuromuscular Clinic at the Stanford University School of Medicine in Palo Alto, and I'm really glad he did!
My first visit today was with the Chief of Neurology (MD and PHD). He was joined by a fellow doctor specializing in MG research, a Nurse Practitioner, the on-site Pulmanologist and a representative from MDA. (MDA offers support to MG patients and funds this clinic.)
For the first time I felt I had a real team dedicated to helping me get better or at least keep MG from ruining my life.
Needless to say they are taking an in depth look at my condition and are working on a sustained treatment. They have already diagnosed some previously undetected symptoms.
A new sleep study has been ordered as my CPAP may actually be obstructing my breathing at night. Seems that the constant air pressure may be putting an unnecessary strain on my diaphragm when I exhale. Perhaps a BiPAP machine which uses two different air pressures may help my situation.
I feel fortunate to live close enough to such a great specialized clinic.
Good thoughts to all. And don't give up hope; there really are good people dedicated to helping us cope with MG.
A few years back one of our forum members got rude treatment at this same facility and was discouraged from ever finding help. She finally did but almost died in the process. She was ridiculed and made to feel it was all in her head.
I think it is important we give feedback to one another when we find good treatment and of course bad treatment too. Also we have to keep in mind that programs can improve and also deteriorate. So much depends on the timing and the doctor and their track record and experience. Teaching hospitals can change in the blink of an eye.
It is encouraging to heart you got such good solid help! I know my BIPAP is a godsend for me and think you will find yours the same.
I think it is important when things change at a clinic that has had a rather spotty reputation in the past to spread the word about. Years back their sleep clinic was not as responsive as it is today but they have added knowledge now. Many of us know that just having a recognized name at an institution does not guarantee quality care. Some of us have had rejection at name hospitals and gotten good results at others. Much depends on the individual doctors you access and it sounds like you have hit this hospital at a time when they truly seem to have their act together. Good news!
I think Stanford is the best place to go for treatment of MG. My doctor specialized in this disease, and has literally put me back on my feet.
Bob
When I was hospitalized for MG breathing problems a couple of years ago, I had a dozen neurology residents each come in and run through the tests individually for MG -- they were eager to learn from a patient rather than a textbook 00 and we MG folks are somewhat rare.
I wrote about it on my blog at http://riverroadrambler.blogspot.com/2012/06/packs.html where I tried to think of a name for the roving packs of doctors and students.
Good Luck and I hope you find the team approach continues to be helpful.