I am here for help for Momma.
We are at a complete loss of where to take her. I dont even know if I'm in the right category…
Mayo clinic will not accept her…we've tried 3 times…with referrals and without and every time she has been denied 🙁
I will try my best to explain and make this as short as possible. We have been looking for answers for going on 2 Years…and I am exhausted. Started off in 2016 with her having a 4 day long migraine and neck pain for 4 days straight. And on the 5th day we were driving home from a family Christmas and she lost movement from her neck down. Headache and severe neck pain. Still had feeling/ reflexes and such just unable to move anything from. The base of her neck..down.
After 8 days in the hospital she finally stayed to regain her arms/hands and had to learn how to feed herself and walk again. So she went to the nursing home for rehab. The hospital sent her home with a diagnosis of Conversion disorder 😠 since the MRIs, CT scans and everything else came out clear.
She has had this happen 100s of times in the last 2 years and noone will help.
She has had her neck fused from c3-c7 and has DDD, RA, Fibro and has been recently diagnosed with Small Fiber Polyneuropathy.
We have seen specialist after specialist:
Went to TX To see Dr. Trevedi in thinking maybe it was HypoKPP.. she said it wasn't. It was Secondary Periodic paralysis with an underlying medical cause.
Went to Endocrinologist thinking maybe conn syndrome, pheochromocytoma because during some episodes her BP spikes really high with the highest being 259/137. Conns and Pheo was ruled out. She has also had significant weight gain and severe fatigue.. cant figure that out either.
Went to Caring medical and she was diagnosed with C1/c2/c3 cervical instability but not bad enough to do surgery on.
Went to Cleveland clinic and they agreed it wasn't bad enough for surgery and nothing in her neck would cause this.
Fast forward to today.
THERE IS SOMETHING WRONG WITH HER NECK.
Yesterday riding in the car after shopping she turned her head and her neck popped super loud, like I had just popped my knuckles. She got an instant headache, severe neck pain and severely tired where she couldn't even open her eyes and lost movement from her neck down. This is pretty much what happens everytime. Her BP spikes too and she gets hot.
But all the docs say there is nothing wrong. The pain managament doctor said she has a whole lot of scar tissue that's wrapped around her nerves and bones and the fusion spots that could be causing all this neck pain.
The only thing I can think of is maybe this is the way her body reacts to pain? Shuts everything down except the vital things (heart, lungs, respiratory system ect) in response to internal pain? Her GI tract "paralyzes" also and shes been diagnosed with slow colon.. All I know is… we've got to find answers!!! PLEASE HELP!!!! 🙁