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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Diagnostic EMGs, NCV, repetitive stim (https://www.neurotalk.org/myasthenia-gravis/82736-diagnostic-emgs-ncv-repetitive-stim.html)

rumpled 03-31-2009 09:12 AM
I understand - I have been diagnosed, undiagnose, and re-diagnosed. I have doctors tell me that I am not sick. That I just need to exercise.
All my EMGs but one have been normal, and I have an abnormal SFEMG (go figure), all pretty much normal blood tests (but they just ran some more).

I do have overlapping disorders (endocrine nightmare city) and so many of the docs just write me off. But I know many people in my boat (sad) and only one other is as bad or worse than I am. So I am pretty sure that it is not all the endocrine stuff, but something else. Some doctors agree that I am a mix or that the endocrine is hiding things (steroids do that).

Neuromuscular is very hard. I don't know if you can get clean results on everything. That expert must only have a couple of patients.

erinhermes 03-31-2009 01:00 PM
Hello Wonder!
 
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!

:hug:Erin:hug:
Quote:
Originally Posted by wonder (Post 488867)
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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