Hi Alvin, I know you are asking
@Silence (not me
) so I will keep this brief but feel compelled to reply b/c I think your question is so important. I was given a CFS diagnosis by a GP in early 2013 and basically fired by her and told there was no treatment. I accepted this diagnosis as fact as I continued to get worse until I could not stand/walk at all without a wheelchair 24/7. I saw doctors but if they had a specific theory of CFS, they just plugged me into their theory whether they had examined me or reviewed my test results, etc.
I began working with an ME/CFS specialist in mid 2014 (who initially accepted my CFS diagnosis b/c I do meet many of the criteria). But as time passed, he studied and reviewed my case in it's entirety and now feels that I do not have CFS, that my symptoms are different from most of his CFS patients, and that we needed to keep digging deeper even though it was unclear what my true diagnosis is called. I have POTS & MCAS but something else was going on, too.
Long story short, after a neuro found I had a weird calcium autoantibody (but then totally dismissed me), my main doctor took this very seriously and understood that this autoantibody required cancer checks and that I probably had lots of other autoantibodies, too, and he was correct. He felt high dose IVIG was my best chance at improvement and he was 100% correct and this led to Rituximab (in 2 wks, hasn't happened yet).
So, the point of my story (damn, it got long after all
) is to not accept anything as fact until you have the evidence and for Omar and Silence, to see specialists in ALS/MND vs. a random doc who is just guessing. The docs who will say, "I don't know what's going on but let's keep looking" are the heroes in my book vs. the ones who have a single theory that they plug all patients into.
Am still praying for you
@Omar (and now
@Silence, too) that an explanation will be found that it is not ALS. It may not apply but many autoantibodies cause muscle weakness and are worth checking into (in addition to the EMG and nerve conduction tests with a good neuromuscular doc, although I know a good Neuro is sadly very hard to find).