I saw your post in the "Your diagnosis, treatment and other information" sticky. That is where people put info about their "MG journey" for others to read. So I thought I would start this post here with the info you put up there.
Quote:
Hi all
Lately I have been experiencing weakness in my legs that is accompanied by the intense feeling of a sense of my muscle just having wood in them. I loose my balance and fall into the wall. my upper body is ok-not near as bad and it catches me when i am falling. I feel so weak and and always exhausted. My cervical and brain mri were unremarkable. I am scared at how fast this is progressing. It came on so fast. What are your thoughts? I was originally diagnosed with Fibro due to the fatigue and always being tender. have any of you had this before?
I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore
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Well, my thoughts are that you need to see a neurologist. If you have MG, it won't show up on an MRI. They have to run specific blood tests: Acetylcholine Antibody and MuSK antibody. They would also need to do a repetitive nerve stimulation test or an EMG or a SFEMG.
If you have polymyositis, they should be checking your blood for CPK, creatinine phosphokinase. That disease is often checked out by a rheumatologist, since it is an inflammatory ("itis") disease.
If you have a primary doctor, they can check for basic things like thyroid, complete blood count, B12 or other vitamin levels, etc.
One thing that might help you, since you sound overwhelmed, is to write down every single symptom you are having, when they occur (i.e., always or only in the morning) and what is the severity of each one. You might start to see a pattern and be able to relay them to your doctor(s) better.
You need the help of doctors. There's only so much we can do here. I hope you can find someone to help.
Annie