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?
Joe
Joe
I'm seeing a specialist next week and want to be armed with the best info. I can't imagine how some of the others have dealt with this and worse for 6 mo. to 2 years without relief.
Willing to try anything as it's cost me my job and quality of life.
Mestinon only helps about 20% of people with double vision. You may have to start some other treatment, steroids, ivig, plasma exchange, cellcept, imuran etc.
Did you try an eye patch or putting tape over 1 lens of you glasses?
double vision is caused because the eye muscles are weak, and both eyes do not focus on the same point. By blocking 1 eye your vision should be ok except for depth perception.
Be well,
Welcome! Great people, here.
Ditto - to everyone's suggestions.
Your double-vision sure sounds quite severe, glad you are going to the Specialist at Stanford, next week.
Hang in there!
It is very frustrating, when you are first hit with MG.
- Ross
PS: yes - try a patch over one eye.
blocking the input from one eye - can sometimes be a help.
Feel better.
Al
I feel more comfortable with Doctors when I can go in with ideas about what may help me and I got great first-hand info right here!
There really is a lack of expertise out there about MG. My Sister is a RN and had to look it up and do research before she could understand what I was talking about!
To Melanie, are you still on meds 20 years after the first diagnosis?
Just how risky is the thymectomy? I imagine that would a last resort.
I've only had one other symptom of MG where I feel weakness in my jaw muscles, even felt like spasms. Doesn't occur often, maybe once every few days. Hopefully the symptoms I have are the very beginning and with the right treatments I can keep this under control.
After a year I wound up having strabiscus surgery to straighten the eyes out. My NO said that it was a step to do if the eyes were stable.
My advice to you is start Cellcept and do a round of IVIG. My double vision is gone 99 percent of the time. You only have ocular MG at this point. Let's get you treatment to make sure it cannot get worse and improve.
It will take time for a cellcept to kick in. If mestinon is not effective, you may need another rd of IVIG later. I am no expert, but my advice is the safest and quite possibly the most effective treatment plan one could ask for with MG. I pondered for months, getting worse before moving forward. My only regret is wish I would have started sooner.
Good luck to you.
Troy