[AnnieB3]

New to this Forum, Hi I'm Ella
Good morning everyone, I'm new to this forum and not sure if I'm using this cite correctly. Quite frankly I'm to tired o read the instructions. For the past two years I have experienced several episodes of complete exhaustion, problems swallowing, muscle weakness beyond explanation, my head feels like it weighs 100 lbs, choking when I eat, even soft foods,constant spasms, and have no energy for several days that I can't even get out of bed. I have been seeing a Neurologist for severe migraines and was told this is my problem, never being told why I am so fatigued or being told by a Doctor that I must have a VIRUS, and there is nothing that could be done. Recently, I collapsed at work and the NEURO Dr. decided to run additional blood tests and has scheduled me for an EMG in 3 weeks. I had barium swallow to examine why I'm having problems swallowing, the Dr. told me to tip my head back slightly when I eat or drink, which does help, but not normal> and doesn't always work. The first blood test came back with a vitamin D deficiency and I as told not a big deal. I am waiting for the ArCH blood test results at this point. I have read several posts which indicate even if these tests come back negative I could still have MG. I am really frustrated. I heard one of the Drs suggest that it could be related to stress. I live in Georgia and I don't think there are any Doctor's equipped to make a proper diagnosis. Does anyone know of a good MG specialist? Growing more frustrated each day. thanks, Ella

Hi, Ella. I put your post here (I hope you don't mind!) because then you can get better responses!

It sounds as though you're not doing well at all.

Where to begin? First, don't be frustrated! I'm sure you can get the help that you need soon. Sometimes you bump into a few egos before you find a neuro who can see what's going on.

Second, a vitamin D deficiency IS a big deal. You need to supplement with D3 daily. Recommendations vary, but at least 5,000 IUs is needed to get your levels up. A deficiency can cause all sorts of symptoms/problems and wreaks havoc on the immune system. Shame on that doctor for not taking it (or you) seriously!

Did they check your B12 level? If not, as a primary doctor (if you have one) to run that. You can have more than one thing going on! Heck, I had four things at once years ago and it took a LONG time before doctors figured it all out!

Actually, tucking your chin down will help your swallow much better than tipping your head back (at least with MG). Thickening your fluids would help, too, as well as not having hard to chew food, sharp food, or food that is too hot or too cold.

Speaking of too hot . . . since you live in Georgia, if you have MG, the heat will make MG much worse. Please be careful to not get overheated. If you do, run your wrists under cold water, put a cool pack on your face, neck, or abdomen, sit in front of a fan, or whatever you can to cool your body down right away!

Ahem, neurologists, stress does NOT cause fatigable muscle weakness!

"My head feels like it weighs 100 lbs."

That is what happens when muscles become weak! It's a typical, although not constant, symptom of MG, especially if it fluctuates.

It sounds as though you had a MG exacerbation or MG crisis when you "collapsed" at work. If that ever happens again, or if you can't swallow, breathe well, or move, you need to dial 911 and tell them (if you can speak) that you might have MG. It might help to have a note to that effect in your wallet or your chart in the nearest hospital. It doesn't matter if you don't have a diagnosis yet. The hospital would need to know if you could have MG!!!

It would also help to see a pulmonologist. MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are tests that are specific to a neuromuscular disease. A good pulmonologist can tell if you have fatigable chest wall muscle weakness after those tests.

When you get your antibody test results, make sure that you have a copy of them. The other antibody test that is available is the MuSK antibody.

And, yes, you can have MG without a positive antibody test. They are discovering new ones all the time (but don't have tests available yet). They can do a RNS, EMG, or a Single Fiber EMG. I hope you can find a MG expert in Georgia to help you (thanks for the Shands recommendation, xrpodn!).

I'm really sorry you are in such bad shape. Nothing but a disease can cause the symptoms you are describing!!! Not stress, anxiety, depression, or any other nonsensical reason can cause all of that. Good grief, where's the scientific objectivity while evaluating patients?!!!

Please, again, if you get worse, the best place for you is in a hospital. If you have MG, you can't know how badly it will become or how quickly. Don't be scared, just get the help that you need!

Let us know what else we can help you with!

Annie