[jaffo]

Howdy From Texas....
Well I'm back...Not on the forum, I'm new here, I'm back to Myasthenia Gravis..

Forums were a rare and crazy idea when I was here before.

In 1997, I awoke with ptosis (droopy eyelid) in my right eye. It freaked out my primary care doc. He ordered scans, film, and bloodwork. There wasn't an antibody test back then.

At the time, I was an RN at Wake Forest University. I was pretty calm about the whole incident until symptoms got worse. Even the neurologist weren't sure what it was. By happenstance, I bumped into a Neuro-optomologist. He diagnosed me on the spot. He referred me to Dr. James Caress. Dr. Caress did a tensilon test. He was passionate about doing MG research.

The mestinon reeked havoc, with my stomach. Dr. Caress felt that high dose prednisone could be used to put at least some Myasthenia patients into remission. He gave me 60mg/day for a year. I was part of the study that he published and is now the standard for treatment.

I entered remission almost immediately. (I also went from 165-245 lbs in a year). My bout with MG was under 6 months.

That was 17 years ago. I guess I thought I was cured. I have a primary care doc, but wasn't even being followed by a neurologist.....I'm active, playing golf, disc golf, pilot, over 500 skydives, motorcycles, and other than some grd and a little high blood pressure, pretty darn healthy.

Fast forward to this past May, I woke up dizzy, light headed. I couldn't place the weird feeling. It took a whole day for me to realize that it was double vision. When I looked to the right, the world was fine. When I looked to the left it was doubled.

I have a friend that is an optometrist, he diagnosed me with 6th nerve palsy. I'm 46 now and his best guess was diabetes. He sent me to my primary care doc to get blood test. The blood test showed no diabetes.

I'm well tied into the local medical community, everyone knows me because of my position, but even I could not pull enough strings to get into a neurologist under 3 months. I was absolutely miserable. I had to wear an eye patch, headaches, and too tired to drive often. When you can't see, everything else is miserable.

I finally saw a neurologist who ordered scans and blood test. The antibody test were "definitively positive". I'm back on mestinon and prednisone.

I got lucky before, and only had a brush with MG. "Only a flesh-wound."

I have a feeling I'm not coming out as unscathed this time.

[Lara]

Hello jaffo,

Welcome to the NeuroTalk Support Groups.
I'm sorry for the reasons that bring you here though.

Here is the link to the Myasthenia Gravis Forum

I'm sure you'll find support and helpful information from the members there as well as share your past experiences.

take care.

[Kitt]

Welcome jaffo.

[Darlene]

jaffo,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene