I saw 2 neurologists this year after suffering a severe month long PEM flare (i did not know what it was at the time though). This flare caused lots of neurological symptoms. I had never before had. Pronounced vision changes, a 24 hour episode of lower left facial palsy, widespread paresthesias, uncontrolled jerking of my head, left arm and leg, and so on.
1st neuro I saw was nice. He ordered a brain and spine MRI w/ contrast, but no abnormalities except for a couple spots that they said were normal for someone my age (37) and someone with migraines. He also ran some blood tests. After finding no abnormalities that would explain my symptoms he told me it was obvious something was wrong but that he didn't know what and explained neurology does not hold all the answers. He diagnosed me with a "functional neurological disorder". I was frustrated but appreciated him not brushing me off or telling me it was in my head.
2nd neuro was a MS specialist. Because I also have bladder issues, and numbness/weakness in my left leg I wanted to make doubly sure MS was ruled out as the cause of my issues. She was nice, and in the first appt after looking at my MRIs and records she was almost certain it was not MS, but said she still wanted to help me figure out what the problem is. She had an EMG and NCS done, and blood tests that had not been done before and all we came up with was a deficiency in serum copper and ceruloplasmin. We then made sure it was not Wilson's Disease and it was not. It was during this period that I on my own became aware of ME/CFS and realized that I meet all the criteria (CCC) and that it can explain all my symptoms. It was then I realized I was experiencing PEM all the time but didn't realize that's what it was. I mentioned the ME/CFS possibility to her during my final appt with her and she barely peeped a word in response. She wrote me a prescription for physical therapy and sent me on my way. Thankfully I followed my own instincts, did more research, and did not go to physical therapy.
It is mind boggling (not really but it should be) that neither of these 2 neurologists at large city hospitals (1 a teaching hospital) thought of ME/CFS as a possible explanation for my symptoms. That I had to come across it on my own. This is the 2nd time I have gone on to be diagnosed with a serious disabling condition because I myself figured it out after doctors failed to. The first time was in 2013 and this was after 13 years of daily suffering with doctors telling me there was nothing physically wrong with me. There indeed was and I ended up having to fly cross-country 3 times to see a specialist and have major surgery at Massachusetts General. Because the diagnosis was delayed for so many years the damage proved to be permanent and I can no longer work or drive.
Thank goddess for the internet!!! Seems some of us have to be our own doctors.
I plan on writing letters to each specialist I have seen previously to inform them that there was indeed an explanation for my symptoms and include some info on ME/CFS. Maybe it will make a difference in another patient's life who comes thru their door. Maybe I can plant a seed.
the end.
