Quote:
Originally Posted by Kathie Glenn
Diagnosis: Ocular Myasthenia Gravis
History: Started seeing around September 2008 and double-ignored this for a bit thinking it was my fairly new glasses.
Nov 7, 2008 my mouth started drawing and my tongue was numb. Went to ER and had CAT SCAN. Negative.
Went to Optometrist - told me it was my Fibromyalgia and weak eye muscles causing this. Didn't agree with that and called my family doctor who had me see an Ophthalmologist the next day. Had MG blood workup done - came back negative for MG. Went to Neuro Ophthalmologist - examined eyes and said they were strong. Had MRI - clear. Went to Neurologist - had exam and he immediatley said he thought it was MG. Started on Mestinon, which did no good at all. Had EEG - clear. Went to MUSC (Medical University of SC in Charleston) to Neuro-Muscular Neurologist. Had more blood work done and SFEMG. Blood work negative. SGEMG positive. Started 20mg Prednisone Feb 2009. In March 2009 he raised the amount to 60 mg daily to treat it aggressively and I also had the gamma globulin infusions for 5 days. By now it was April and the vision was still terrible. I took Short Term Disability through work and stayed home for 3 1/2 months. The side effects from the Prednisone were actually worse than the disease. Gained 35 pounds, couldn't sleep more than 1 1/2 hrs per night....and I'm sure you know the rest!
Vision improved by mid-June and I was back at work. Started decreasing amount of Prednisone and added Imuran. Couldn't take Imuran and changed to CellCept in January 2010. Some days I see ok and have no trouble driving, others I don't drive because of the DV. Seems worse at night and when I am really tired. They are discussing Plasmapheresis next. Not sure I want to go through that.
It is getting harder to work, especially using the computer and sometimes driving. Not sure what to do - I ask myself if I need another opinion? My mother has temporal arteritis and I wonder if that is what I could have. Just in a confused and somewhat depressed state about this. Can't do what I used to or what I want to and have no energy. Any feedback will be greatly appreciated. Thanks!
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Well, if you can avoid driving, I would certainly do that.
Oh, Hi by the way, my name is Melody and I'm married to a man with severe neuropathy in both feet. That's why I mentioned the driving.
First, welcome to our little group of nice people. You will get all sorts of good info here.
Let me tell you a bit about my husband.
My husband drove until about 9 years ago. His feet have been getting numb and number for almost 20 years.
So I had no idea how numb his feet were until the day we got in the car, he put his feet on what he thought was the accelerator and stepped on the brake, and then he couldn't tell which was which.
I demanded that he stop driving that day. He did, he gave back the car, and that was that.
When you can't be sure of your driving, well it's something to think about.
You don't want to get into an accident and have any more problems, right?
So here's hoping that things clear up for you and your vision stabilizes, but if it does not, then please think about what I said.
Take care, Melody