Grand Magnate
|
|
Join Date: Feb 2009
Posts: 3,306
|
|
Grand Magnate
Join Date: Feb 2009
Posts: 3,306
|
Hi, Maniac. Welcome to the MG forum!
Have they done an MRI of your brain and neck? Have you seen an internist to have basic testing such as a metabolic panel, B12 and D, thyroid, UA, CBC, etc? If not, do that.
Have you seen a neuro-ophthalmologist to determine if your eyelids are fatigable?
Have you been to a pulmonologist to see if you have fatigable breathing muscles?
I'm sorry to break this to the Boston neuro, but slipping a paper under someone's foot is not part of the MG clinical exam or any kind of proof! MG is all about weakness about exertion, and many MGers need more than one "hop" to cause that to occur. Add heat to any weakness and we become exponentially worse.
There is also the MuSK antibody test. They are discovering new ones, such as LRP4 (no test yet). No MG expert would dismiss someone with fatigable muscle weakness due to a negative AChR antibody test. BTW, do you have the test results? Or are you taking their word for it? Don't do that! Get the copies of the tests.
Can anyone recommend a neuro in Maniac's area?
I can't say what is going on. But people don't have those symptoms for fun! I hope you will find a bunch of doctors to help you. I hesitate to send you to Drachman at John's Hopkins, but he is an expert.
Anything else you can share about your symptoms? Keep a journal of all of this. That will help. I'm sorry you are going through this.
Annie
|