Well it seems lots are reading my thread, but only Annie has responded. Does that mean you all think I am over reacting?

Well the only thing I can add is my blood work for antibodies last month came back negative then 2 weeks ago they did it again (different doctor) and it came back VERY HIGH. I am on Mestinon but it is doing nothing for my severe double vision. My new Neuro said my hip flexor muscles were weak. To test this from a sitting position you raise up your knee and see how easy someone can push it to the floor. I get the rest of my blood work (12 vials) from Mayo next week.
Mike

Overreacting? HARDLY!! Don't get discouraged, lots of ppl don't "get" this disease, hopefully someday they'll understand....

Well Mike, my abs are always negative & neuros can demonstrate clinical pblms, but the tests just don't confirm it....I also have very weak hip flexors & I can't walk any distance...fatigue is overwhelming....have to just keep on truckin'....

Dottie

Don't let the lack of response get to you! It's been fairly quiet around here lately. Even for me, it can be overwhelming just to deal with the health issues I have, let alone trying to help others. So many people with MG are worn out on a daily basis, so keep that in mind too.

I will again encourage you to ask for some basic tests to be done, like a chem panel. Have they run the acetylcholine receptor antibody panel (binding, modulating and blocking antibodies) and the MuSK antibody? If not, they should. An IgG deficiency could make a normally positive result appear negative.

Dose your double vision go away when you close one eye or not? MG double vision is called "binocular" double vision and it goes away when one eye is closed.

I would NOT accept an explanation from a doctor that "it can happen" for the reason you have a thyroid problem. It could be so much more than that. So many GOOD doctors do more tests, like thyroid antibodies and sometimes an ultrasound of the thyroid gland. Do you have copies of your test results? If not, please get them!!!

Even if you have residual nerve damage from Bells, B12 will still help heal any leftover peripheral nerve damage. You can't get too much of that vitamin. Without it, people die. It's a very significant vitamin.

I honestly believe you should consult with an endocrinologist. One other thing that happens towards the end of the day is that cortisol runs out. Sure, you could have MG and that tends to get worse towards the end of the day too. But you really should get a second opinion on your thyroid situation.

I am trying to help but that's all any of us can do. The rest is up to you and your doctors. I hope you will get help and figure this out soon.

Annie

Thanks for the help. I do take a b complex everyday since I had the bells palsy, and also take a multi vitiman. The residuals don't bother me much. After reading posts about others who were diagnosed with bells to find out later it was MG, mine does not sound like their. Mine responded to prednisone, and was gone withing 6 weeks. That was almost 4 months ago, and it has not come back. I suppose if it were MG it would have come back. Also they talked about not being to open their eyes. My problem was I couldn't close my eye. I also had no movement on that whole side of my face. As for my double vision, yes it does clear if I cover one eye. a regular eye doctor saw this and was unconcerned. He said it was VERY VERY mild. It has never gotten worse than that. And like I said I don't notice it unless I want to. If I sit here right now and allow my eyes to relax everything goes double, but I am also not straining to see without allowing to relax. it's mild enough that I can compensate. Also my mother has this, along with her sister, and my niece. None of us have been diagnosed with MG. Perhaps this is all just PNHE and it was an autimmune response to what ever triggered the Bell's.

Hi, no I don't think you're over reacting, but at the moment I'm struggling with my MG, and reading and responding to long posts its hard, I find it hard to concentrate :-)

32 is not too young for MG, I was 30, had my life all planned out, sheesh did it change that.

I'm sorry your wife thinks its all in your head, that must be hard for you, wish I had some suggestions but I'm single, all I had to deal with was a very supportive dog.

I agree with Annie, get some more basic tests done, including an ach receptor antibody panel, maybe find a Dr who is a bit more supportive, yes I know this can be hard, I've been there, and am in the midst of changing my General Practioner.

Please don't think we don't care if we don't respond, sometimes we just don't have the muscle strength or the emotional strength to reply, doesn't mean we don't care, we just are a bit tired :-)
take care
Kate

Again thank you to everyone for their support. I can certainly understand what you all go through. I was very close to my grandfather. He passed away over 3 years ago. He gave me his wedding band before he died. I celebrated my first wedding anniversery when he celebrated his 50th. I saw what this disease did to him. There were 2 times where we thought we were going to lose him, and both times he fought back. He was such a strong person.

Who knows what is going on with me. I think there is a mental aspect to all of this. Having Bell's Palsy really threw me for a loop back in April. I remember that was how my grandfather started out (and they thought he had Bells). It scared me, then the twitching started, and I got even more anxious. I ended up taking Ativan for like 2 months. I have been off of those pills for 2 months now. It's amazing what the mind will do to the body. Hopefully this will all become clearer soon. I am very busy at work now, so I think I am going to hold off on doctor visits for now. When my thyroid meds run out I will talk to the doctor then. Thanks again for all of your support. You are all such wonderful people and I hope they find a cure for this disease!

I sure hope to get some answers next week. My mom along with 2 of her sisters had MG. If I could get this double vision cleared up, I would be happy. Of course I'm retired so work is not required so I can rest when I need to.