NeuroTalk Support Groups - To Jeffcaptaink

Quote:

Omg...
My wife made me do it.... she placed this forum on my favorites page and told me I should read... I have had double vision for 19 months. Saw opto, opto neuro and then neurologist. I examined and found nothing wrong. In discussion before leaving his office, he gave scrip for Mestinon. IT WORKED. Life was getting better... until some weaknesses began last year. Went back to neuro. He did tests, tests, tests. All came back normal. Passed me off to an associate who gave me a half-assed examination and said it was all psychosomatic. Nice... I figured myself to be a nutcase and decided to endure.
My endurance has failed me more and more. Weakness in arms, legs. Swallowing issues increasing. Got Mestinon and it works, for awhile. Have to drive home at end of day with one eye closed.
As I read, I feel like I am not only one in this situation. Still, not really wanting to go back to a Dr. and have him tell me I am imagining all of this. Unfortunately, it is a drag. My loving wife is supportive but I hate having to lean...
Thanks for listening. Glad I am not alone, even if nothing else comes of it.

I'm glad your wife made you do it! ;) Welcome to the forum!

What tests did they do for you, Jeff? Did they do the AChR antibody test and the MuSK antibody test? Did they do an EMG, RNS, or a Single Fiber EMG?

Were your neurologists MG experts? ;)

One thing you can do is to see a neuro-ophthalmologist to assess any double vision. They can tell if you have fatigable weakness in your ocular muscles. That's one more step to have proof of MG. They can also give you tips on what to do for double vision.

Are you short of breath? A pulmonologist can assess that, and do tests such as MIP and MEP (specific tests for MG).

Your symptoms sound a lot like MG. And the fact that Mestinon is working backs that up.

How else can we help? If you let us know what city/state you live in, we might be able to refer you to an expert.

Be careful in the hot weather! It can cause an MG crisis fairly quickly. If you can't swallow, can't breathe well (in or out), or are generally very weak, that's the time to dial 911. A MG crisis can progress rapidly, and there's no way to know how bad it will get.

This is a great place for support and information. MG is not an easy disease and there's a lot to learn. Go to www.myasthenia.org for more informtion, such as what drugs can make MG worse.

Please let us know what else we can do to help, okay?

Annie