I fully agree with that, and I am sure you will do even better with proper treatment.

I know its not easy to take care of all those medical problems and I can understand your reluctance to see doctors, but not all are like that (as you have seen), and I am sure that by now you can easily recognize who is and who isn't.

alice

Hi, Iamatthebeach. Do you have a more informal name we could call you? ;)

I would like to be at the beach too.

The important thing is to make absolutely sure what you do have. Has the acetylcholine receptor antibody test (binding and modulating antibodies) been done lately? What about the MuSK antibody test?

There is autoimmune myasthenia gravis, which you can get at any age. Saying "congenital" myasthenia gravis sort of confuses the issue. That would simply mean that you have had autoimmune myasthenia gravis, aka MG, since birth or shortly thereafter. It might be better to say that you've had MG since birth, if that's what you have. Doctors don't say CMG. It's either MG or CMS.

Then there are the congenital myasthenic syndromes, which are mostly since birth since they are genetic diseases and not autoimmune. That's an important distinction since the treatments would be different. Some CMS's have onset at birth or in childhood but some do have adult onset. There are over one hundred mutations, so far.

http://neuromuscular.wustl.edu/synmg.html

If you have one of the congenital myasthenic syndromes, it's essential that you find out if you have too much acetylcholine or not enough. You said that Mestinon did not work for you. What happened when you took it? If you have a sodium channel CMS, then you would have too much acetylcholine.

Dr. Engel at Mayo (Rochester, MN) does not see patients anymore. I'm not sure if I would recommend them or UC Davis. Dr. Engel is listed but, again, he is not seeing new patients or at least wasn't in 2007.

http://www.mayoclinic.org/neurology-rst/doctors.html

What EMG evidence do you have? Have they done the repetitive nerve stimulation test? A single Fiber EMG?

Breathing tests are not enough to diagnose asthma. They usually do a methylcholine challenge test. I would NOT recommend you do that until you know what is going on with you!!! The drugs they give could make your condition get worse.

Getting a 2nd opinion on your breathing is a good idea. MGers often have restrictive breathing patterns, not obstructive like with COPD. COPD can involve asthma, emphysema or chronic bronchitis.

http://www.lakesidepress.com/pulmona...athe/Secth.htm

How do your symptoms fluctuate? Do you get worse the more you do? Or do you get better the more you do? I know that second question sounds weird, especially to MGers who get worse the more they do but with LEMS and some of the CMS's, a person can get better after they do some amount of activity. If you have too much acetylcholine, you "use it up more" by doing things.

You might want to write down or type your basic symptoms. When they happen or get worse, how bad they get, etc. Seeing things in writing helps a doctor. They can read faster than hear you say things! ;)

I hope you do get answers soon. It sounds like you have been suffering since you were young. But you probably did what I did until I got worse, which is simply "adapt" to your physical shortcomings. I didn't get diagnosed until I was 42 (now 52). I've had MG my whole life.

Keep asking questions. People here are great!

Annie

Hello Annie, I am Eileen,

I 'wish' I was at the beach! Ha!

I know my neurologst said he felt it was neurological. So, that is all i know there. did not realize there were many forms. I was so amazed to be given a diagnoses it took me a few days to recover. I regret not asking for a copy!

both antibody tests come out neg, normal. Many have done them. The Mestinon....I did not notice anything. I was really disappointed.

The EMG... I believe was the single fiber? I should not guess. I am not good at any of this medical stuff. It was done on my leg, came out positive for MG.

You said it with the breathing, it is restrictive. My diaphram, everything is alot of work, very restrictive. thank you for your input there. He was like an asthma sales man. I can not tolerate medications well at all. He had me take one breath of the Advair in the office (I did not want to). I was nodding off while talking withing minutes, hives all over that turned into huge blisters. I jsut cant take meds.

Oh, definitely worse with movement. Seems my whole body has some problem.
You worded it well, we adapt. Do whatever you have to. You definitely know! I always wondered why some things were so difficult or impossible. I started out strong! Beat all the boys.....at first. Ha.
I was adopted. My dad sent me a paper he had from the adoptoin. I was born not breathing. they had to work alot to get me breathing and then I was needing oxygen for a while as an infant.

It really is a good day when things make sense.

I will take all the advice adn questions and be ready for my next appointment.

Thanks for your input.