I agree with everything you said. But my feeling is what works for one case doesn't work on another. My neuro- muscular doctor has me on high dose of Mestinon and also Neostigmine but no results. My neuro-opto put me on Prednisone. He is very aggressive attacking MG. The muscular DR is very slow in his approach. But at $6500.00 a office visit I would be slow too.
Yesterday we discovered my baby sister has MG. My mom and 2 of her sisters (aunts) had it. Now my sister and I are thinking of going to Duke. Mayo (Fla) is too far for us. My sister doesn't have double vision yet but I told her I thought she should get on Mestinon quick in hopes it will slow it down until we can get to Duke.
Mike
Quote:
Originally Posted by catie
Hi Mike!
I'm sorry to hear that the prednisone has not helped your double vision. Are there any other treatment options available to you?
I'm cautiously optimistic that I'll see some results. Neuro told me to try at high dose for a month, and then maintain that dose for a month after seeing results, then taper. Although the Mayo doc wanted to start at 60 mg/day, I ended starting at 20 and increasing 20/wk up to 60, b/c my PCP and local neuro had concerns at starting at a high dose. It's really hard when the docs don't agree and the patient is stuck in the middle. 
I completely understand your frustrations with the double vision, particularly the stairs. I always hold on to bannisters now, or else...  I think it is hard for people to imagine how significantly it can impact the day. I've been told that I should just close one eye and that'll work, but that is not a decent long-term solution.
Fortunately, I can still drive, during the early part of the day. I did recently retire b/c I couldn't see well enough to do my job. The decreased stress has actually been a good thing.
I sure hope there are other options for you. Just seven days on high-dose doesn't seem like enough time from the information I've gleaned off of MG websites.
Cate |