Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am one of the many undiagnosed. I have severe respiratory muscle weakness of unknown origin, extreme fatigue and weakness of unknown origin, esophageal dismotility of unknown origin, speech problems of unknown origin, blurred and double vision of unknown origin, and because I have no positive blood test or emg I can't get the neurologist to do a single fiber (he's never done one,) or a tensilon test, or give me a trial of Mestinon. I would love to find a doc in Portland who would do a tensilon. My next step if I can't find one is to order Mestinon from Canada without a scrip and do a trial myself. I am at my wits end. I have been unable to work for a year and unable to apply for ssdi because I have no diagnosis, other than restrictive lung disease of unknown origin. I am out of savings and will be homeless soon.
Was . His insurance back then called for referrals which primary wouldn't do .he was looking for another one at the time.
As you realize, this is a very dangerous time for you.
Others will chime-in, but I suggest you ask your family health care provider to prescribe mestinon for you, and see if it helps. Their are minimal side-effects, and most likely you will know within an hour or so if it is helpful or not. Being helpful is highly suggestive of MG or LEMS.
If your breathing worsens, you must get to the emergency room. You are in a precarious position. If you end up in the hospital, make sure you (or your advocate) advises them that you are suspecting MG as a possible Dx, but you are still in the early stages with the Neuro.
Next-step, fire your Neuro and get a new one. Most of us have had a few. You do not have ANY time for a wishy-washy, timid Neuro.
Best wishes to you, and keep us posted. Chris.
When they did my Tensilon test, they established a small IV in my hand, but other than that it wasn't too bad.
Next, I would prepare yourself for an EMG (Single Fiber EMG, EMG with RNS, whatever they call it). Anyway, it's not very fun, but you will survive it. It's worth it to try and get a firm diagnosis. All of my bloodwork was (-), and I was diagnosed "electrically" (Tensilon test and EMG). During my "electrical" testing, they took VERY small needles with wires attached, and zapped me with a small electrical current, and they could read the strength of the signal on their monitor. They would do it 3x in a row in the same spot. They did this all up and down my left-side, starting at my foot and up to my cheek. It was NOT fun, but it was bearable. I had NO heads-up or idea what I was getting into, and I was able to make it through. IF that's next for you, I'm sure you will do just fine.
Good Luck with everything. I hope you start feeling better soon.
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