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've been diagnosed with MG after abnormal bloodwork and MRI/CT chest scan ruled out other potential issues. It's been about 3 months now but for a while the DV was manageable. I had a pretty good window I could use to function. About 4 weeks ago I woke up and noticed I no longer had that window...I couldn't shave or see straight without closing one eye.
That was alarming and severely impacted my ability to perform my job as a manager. I could no longer look people in the eye and felt uncomfortable in the highly-visible position I held. Driving 25 miles to work had gone from manageable to impossible as depth perception was gone with an eye closed. I struggled at work and kept it to myself even when others asked what was wrong.
Finally, as I sat home watching TV one night I made the decision that it was time to put my health before my work. I requested a LOA but was told that since I had been with that Co. less than a year, I didn't qualify for LOA. I explained my MG in detail but was told that after 3 weeks of absence I would be "administatively termed".
Unfortunately, that's all legal as I have been on the other side of those decisions before.
My neurologist is very conservative with prescribing steroids so she has had me taking mestinon. They haven't done a thing for my DV yet she keeps increasing my dose and now I'm taking 4 60mg pills a day.
I also got glasses with stick-on prisms but they are not effective since my eyes and the DV is very unpredictable. Sometimes I have periods where I see perfectly fine without prisms, but those moments are rare.
The good news is that I've been referred to a specialist at Stanford University Medical Clinic for an evaluation next week. I'm hoping he will be more aggressive with treatment. I've read about the prednisone and it's side effects but at this point I'm willing to try almost anything.
Has anyone gone through this same course of events? Also, has anyone heard of surgery to remove the thymus gland even though the CT scan showed no abnormality?
That was alarming and severely impacted my ability to perform my job as a manager. I could no longer look people in the eye and felt uncomfortable in the highly-visible position I held. Driving 25 miles to work had gone from manageable to impossible as depth perception was gone with an eye closed. I struggled at work and kept it to myself even when others asked what was wrong.
Finally, as I sat home watching TV one night I made the decision that it was time to put my health before my work. I requested a LOA but was told that since I had been with that Co. less than a year, I didn't qualify for LOA. I explained my MG in detail but was told that after 3 weeks of absence I would be "administatively termed".
Unfortunately, that's all legal as I have been on the other side of those decisions before.
My neurologist is very conservative with prescribing steroids so she has had me taking mestinon. They haven't done a thing for my DV yet she keeps increasing my dose and now I'm taking 4 60mg pills a day.
I also got glasses with stick-on prisms but they are not effective since my eyes and the DV is very unpredictable. Sometimes I have periods where I see perfectly fine without prisms, but those moments are rare.
The good news is that I've been referred to a specialist at Stanford University Medical Clinic for an evaluation next week. I'm hoping he will be more aggressive with treatment. I've read about the prednisone and it's side effects but at this point I'm willing to try almost anything.
Has anyone gone through this same course of events? Also, has anyone heard of surgery to remove the thymus gland even though the CT scan showed no abnormality?
He prescribed 40 MG prednisone to begin and then could move away from steroids once improvement is seen with another maintenance drug. Is that cellcept?
I read someone's post here that when beginning with prednisone, symptoms got worse before they got better. Well, that's what it seems to be with me right now. 5 days into the meds and the last 3 days have been brutal with extreme DV most of the time, headaches, eye strain pressure, etc.
Now I'm just waiting for any small sign that something's working.
I feel very blessed that I was diagnosed correctly on my first Dr. visit and that I have the advantage of living 15 minutes away from Stanford Hospital.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/13995856-scotch-tape-tip-4-double
--Kerry