Hi, Hope4Me. Yes, there is always hope!

You don't have to wait until July to have the AChR antibody tests (binding and modulating) done (send to Mayo). Any internist or PCP can run that test.

Pain can be a secondary symptom of MG, not primary though. When muscles become weak, they can cramp, twitch, and spasm. But MG is all about fatigable muscle weakness that is worse with exertion and relatively better with rest.

If you are sweating quickly, I would suggest consulting with an endocrinologist. MG doesn't cause sweating, but an endocrine disorder can. So can being overweight. If you have MG and your body becomes hot, that will make MG worse.

MG causes antibody destruction of the muscle receptors in the neuromuscular junction. Not enough acetylcholine can get through those reduced number of muscle receptors to get to the muscle. So, acetylcholine (uh-seat-ill-co-lean) makes muscles strong. Acetylcholinesterase (AChE) is an enzyme that comes along to "mop up" the ACh when it is done doing its job.

Heat increases AChE in the body. Therefore, there is even less ACh getting to the muscles, which makes MGers weaker. Does that make sense? That's why extremes of heat (and cold) makes MGers weaker. Heat seems to be particularly dangerous for us.

Think of MG problems as supply and demand. As the demand increases for ACh (after an activity), the supply goes down. The more we do, the less "muscle gas" we have. When we get super weak, we can go into what is called a MG crisis, where we need emergency intervention! Whether someone is very short of breath, cannot swallow, or cannot move well (i.e., squeeze their hands even), or all of the above, that is the time to dial 911. Whether or not you have a diagnosis doesn't matter at that point.

Why do so many women think they're crazy when they are having symptoms of an illness? Normal people don't have to struggle with walking up stairs or drying their hair or petting their dog or keeping their head up! Normal people can do pretty much what they want to—and all day long!

Have you noticed if you have ptosis (droopy eyelids)? Have you taken photos to see if they change throughout the day? Try this for your double vision. Hold your pointer finger in front of your face about 14 inches. Without turning your head, move your finger to the left and the right moving only your eyes. Do you see one or two fingers? If you see two, does that go away after closing your eyes?

That is typical of MG double vision (binocular DV).

Have you had other tests to rule out other conditions? Sometimes you can. have more than one issue at a time. Have they checked your RA factor or is your arthritis that of older age? What about your thyroid, B12 and D, CBC, metabolic panel, celiac disease (if you have symptoms), or any other testing?

I was very relieved once I had a diagnosis. That meant that I could finally have a treatment. If you are diagnosed, please find a MG expert! You need to carefully think about the treatment options and what affect they might have on you. Everyone is different. If a doctor throws Prednisone at you right away, please say that you need to think about all of the options. Pred can cause so many other health issues, including increased infections, water weight gain or edema, brittle bones, Pred-induced diabetes, etc.

Being overweight does not cause fatigable muscle weakness. Neither does aging or crankiness! Any good neuro can easily tell during a thorough clinical exam if you have signs of that. There is also the MuSK antibody test.

If you say what area you are in, someone may be able to recommend a MG expert (if you are diagnosed with MG). They can mean all the difference in the world when you have MG! You can also go to www.myasthenia.org or Muscular Dystrophy Association for more information.

In the meantime, take extra good care of yourself. Do not get overheated. If you do, cool down the entire body immediately. And then rest or nap. If you become worse, don't be shy about dialing 911. Please!

Annie