[teresakoch]

Hi, all. My name is Teresa, I'm almost 50 years old, married with 4 girls. My problems started a few months ago when I finally looked in the mirror because my eye was watery and blurry, and I thought that the contact lens was stuck or something. When I looked in the mirror, I noticed that my right eyelid was droopy. It was still that way a few days later, so I called my doctor's office, and they referred me to an ocular specialist. I was thinking that I was going to be able to get some plastic surgery that my insurance would partially pay for!.....

Well, I found out that my field of vision was substantially reduced - which probably explained the couple of near-miss incidents I had the previous few months with cars on my right side (never even saw them, even though I looked) - so the plastic surgery was going to be medically approved (woo-hoo!). Then the doctor said that there was one more test that needed to be done to rule out a muscular condition, and that's when this whole journey started. I "passed" the ice-pack test - or should that be "failed" it? Anyway, off to the neurologist I went.

I started reading up on MG, and realized that the tiredness that I had been experiencing in my arms when folding clothes and the general feeling of no energy wasn't due to my advancing age and my obesity ("No, really, honey!"). Now I'm starting to wonder if the pain that I have been feeling from time to time in my chest is something other than "The Big One", especially since it feels more like a "Sternum/Rib Cage" type of pain, rather than the crushing pain that HA patients describe.

Our youngest daughter has Down syndrome, and she was diagnosed with Celiac Disease 2 years ago, and I realized that the skin rashes that I had been experiencing since childhood were the dermatological manifestation of CD (I had negative blood test results for CD, but carry the gene). So I have been on a gluten-free diet for the past 2 years, and will be on that for the rest of my life.

I felt SO good when I started eating GF, it was like a miracle for me. I lost 40 pounds without even trying, and I had more energy than I can remember having since I was a teenager! But a couple of months ago, I started losing energy again, and I gained all of the weight back - the upside is that when I went GF, a lot of the fat converted to muscle (without exercise - hooray!), so I am still a couple of sizes smaller than I was 2 years ago.

So I've had all of my tests, and now I'm in limbo. The blood test was negative, as was the nerve conduction test; my thymus is normal, and I only had one abnormal result on my SJEMG test. The doctor isn't sure if that is a "fluke" result, or if it is an indicator of MG. I just started taking generic Mestonin last week, and I am slowly working up to see if there is any change in my eyelid position.

The neurologist is great and comes highly recommended, and I do feel that I am in good hands with her. She hasn't diagnosed MG yet, as I think she wants to see the results of the Mestonin trial. If this is MG, I think it was caught VERY early, so I am hopeful.

I guess my question is: has anyone else experienced this? If so, how long did it take before you got "worse", and how bad did it get? If it weren't for our youngest daughter, I wouldn't worry, but while she is almost 9 years old, in many ways she is still like a 4-5 year old in that we have to keep a pretty close eye on her around the house (all of our other daughters are pretty much grown - the next oldest one is almost 18). It takes a lot of energy to keep up with her! Fortunately, we have a woman who comes in to help with her on weekday afternoons, so that takes some of the stress off of me.

I worry that I will become a burden to my husband and my kids. I worry that I won't be able to take care of my parents. I really don't want them to worry about me, because my younger sister passed away 18 months ago, and I'm the only other child they have. I wasn't even going to tell them about this, but my dad was here visiting, and he happened to see something on the counter that talked about my neurologist's appointment. So now they're worried that they might lose their only other child. I know that doesn't happen much anymore, but it has been so hard on them.

I've always been the "rock" of my family - and we have some strong members, so that's saying something. I don't want to lose that.....

Thanks in advance!