I occasionally have weird things happen to my body, usually related to nerve issues. Last night, I woke up and had been sleeping on my back (I normally don't sleep on my back, as it seems I get more stiff. I generally start sleeping on my side, with a smalll pillow between my knees).
Evidently, my ankles had been flexed, pointing straight. Right away I noticed they felt odd. They felt like they were stretched as tight as rubber bands--it pulled and pulled. I got out of bed, and all of a sudden, it was like I had a 'nerve storm' in both ankles. The nerves must have been sort of shut off, I think? It was creepy. I "lumbered" out to the living room and sat on the couch and massaged both ankle fronts. It helped pretty quickly. I had taken a muscle relaxer before bedtime.
I suspect this had more to do with my nonspecific neuro condition than with my fibro(??) Can anyone relate?
This morning, I phoned my neurologist's office. I was a bit disappointed in their reply, yet I do see where they are coming from, too.
The nurse said I should start by seeing my primary doctor. I told her it does seem like there are nerve issues involved in this (I've had a few somewhat similar experiences), so wouldn't it make more sense to see a neurologist? She had talked to the doctor (neurologist) and he had said since my condition is so strange, he doesn't know if it can be helped by a neurologist. I was quite surprised by that! He had also sent me to a rheumatologist last Fall. None of the doctors seem to know what to do with me, I guess. The nurse did say after I see my primary doctor, I could always go back to the neurologist.
The original neurologist I had around 2003 was considered one of the top neuros in 5 states, according to my previous primary doctor (now both are retired). I feel I did have a very thorough examination and tests by him, yet they were inconclusive. They still don't know what I have, though he thinks it could be related to a severe flu I had as an infant, where I was near death.
As I'd mentioned here before, he said his best guess is something similar to cerebral palsy. He told me he had initially thought I either had MS or ALS. I guess I'm kind of a mystery.
In the past year, things do seem somewhat worse, yet I'm nearing my mid-60s and am no kid anymore.
I also wonder if I take too FEW meds? I can sometimes get by with very little. I find they are very drying, and with being at risk for glaucoma and also UTIs because of bladder prolapse, it's a concern of mine (though I do drink lots of water!)
Sorry for the long ramble. I do have an appointment next week with my primary doctor and will likely get some labs done. But I still have a hard time thinking a primary doctor would be very familiar with neuro issues, or am I wrong? It almost seems like the neurologist doesn't know what to do, but as I said to the nurse, couldn't they check for pinched nerves, disc issues, etc.? But--they want me to see my primary doctor.
Thanks for any thoughts.