Hey there! I know it is frustrating, but please hang in there! It took a long time to finally get my "proper" diagnosis, but it was well worth it!!!!!
I know my face was frozen by the time I finally was dx'ed...people just thought I was being rude or ugly.......people (my family) also thought I was trying to get attention or needed to get out more--------people have no idea how hard it is on us.....none!
Obviously there are a lot of really, really smart people on here who can give you lists of questions and answers (Brennan and Becky especially), but if you just want to talk or vent I am here for you!
Erin
Quote:
Originally Posted by wonder
Thank you.
I am not sure if I get ptosis or not. Same with other facial drooping. I may try to take pics. If I have it, it's mild apparently. I know parts of my face feel a lot weaker and people think I am almost sulky looking, but I'm just tired out there.
Yes PFT is something I am considering too. I think I'll eventually get one "just in case" it shows something, but I sort of doubt it will, and I am prepared for them to tell me that stuff about not putting in enough effort. I feel like if they were trying to test me, I would be exhausted in about 30 seconds and start to feel like passing out.
The neuro I saw was an expert in this stuff, but I think I was horrible about explaining my symptoms, and I think he really jumped to the conclusion that I did not have a neuromuscular disease. And he was very big on test results and I have a negative/clean EMG and NCV and AChR. However I have reasons to believe that my EMG and NCV results would be different if I did them again in the future, although I am not too sure of that. It seems to make more sense to do SFEMG or repetitive stim if I have those options (and LFT). Part of my reason is that EMG was testing the major muscles of my legs and I think they would only see the problem in other areas. I'm told they can test shoulders and wrists.
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