Thanks Annie and Kathy for your responses. I have had all those tests except SFEMG. I have heard that the ALS Center will likely want to do all these tests again. I guess that will be fine with me as long as we get some answers. I am going to the ALS Center on Tuesday if that doesn't pan out I guess I'm off to Duke. Again thanks so much, somehow this gives me comfort.
Mike
Quote:
Originally Posted by AnnieB3
Hi, Mike and welcome.
You certainly do want an expert evaluating you. Some regular neuros may not be aware of all of the aspects of myasthenia. For example, did you have your RNS test while on Mestinon? That can alter the results, make them look normal when they wouldn't normally be so.
I don't know if you need to run to Duke in an urgent way but everyone needs and deserves a prompt diagnosis and treatment. If you can swallow, breathe and operate your other muscles well enough, it's not an emergency yet. If you do get noticeably weaker, you will need to consider going to urgent care or the ER.
Do you live in NC? UNC has a great MG expert: Dr. James Howard. Granted, he may not be taking new patients or may be hard to get in to see. Duke has a good neuromuscular program too.
So, I guess my advice would be to get set up with an MG expert and get FULLY evaluated. That would include the Acetylcholine Antibody panel (binding, modulating and blocking antibodies), the MuSK antibody, a SFEMG and maybe a redo of the RNS. If you end up having MG, then they would probably want to do a chest CT to look at your thymus to see if you have hyperplasia or a thymoma (cancer). Some people do have a thymoma but not a lot.
I hope you and your doctors can figure out what is going on! That's great you are so active. 70 is young! 
Annie |