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Old 05-27-2018, 05:58 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Did your doctors do the MuSK antibody test? The LRP4 one? Did they check you out for LEMS?

Patients can have no obvious signs of MG and have a highly positive SFEMG. An MG patient can be in a wheelchair from weakness and have a negative SFEMG. That is a statement directly from MG experts.

Did they do the SFEMG in your limbs? They normally would do the wrist, shoulder, and eye area.

What doctor gave you galantamine? That is normally used for dementia (which doesn't directly affect the disease but cognition, allegedly), not MG. Those drugs act differently than Mestinon. The issue with MGers is not the production of a neurotransmitter. We have plenty of acetylcholine. What Mestinon does is to keep the enzyme AChE (which mops up ACh after it's done with the job of making muscles strong) blocked so that more ACh can try to make its way into our muscles. The receptors to the muscles are damaged, causing our muscles to not have enough ACh.

Mestinon can cause diarrhea in some people. I don't have issues with that myself.

Seeing a neuro-ophthalmologist can be helpful to determine if you do have double vision or other signs of ocular MG. The fact that the muscles were abnormal (via SFEMG) suggests that there should be clinical signs of MG in that area. That type of doctor can do more specific testing to determine that.

A SFEMG is not necessarily specific to MG. They really should do other tests, like the antibody tests above, and pulmonary function tests. A muscle biopsy is not out of the realm of testing possibilities.

If it were me, I'd want to be sure of a diagnosis, before I took a bunch of drugs! And the drugs for MG, such as steroids, can make the signs of MG go away, thereby making a diagnosis that much more difficult.

There can be many causes for muscular symptoms. I hope you have a good primary doctor to check for other issues. Whatever is going on, I think that you need more doctoring to be sure. But that's just my opinion.

Annie
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