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Fri, Oct 12 8:45am · HELP PLEASE..losing movement from the neck down. in Brain & Nervous System

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!!!! 🙁

Sun, Sep 30 12:19pm · Polyneuropathy in Autoimmune Diseases

Interesting! Thanks a bunch. I'm writing this for Momma 🙂 she just got diagnosed with SPFN. shes on several medications and also has RA. I'm on the lookout for a functional medicine doctor I'm STL, MO to start weaning her off her meds and approach this the natural way 🙂

Sat, Sep 29 4:21pm · Polyneuropathy in Autoimmune Diseases

Has anyone here been diagnosed with Small Fiber Polyneuropathy? Who do you go to find the underlying cause?

Mon, Sep 24 2:06pm · Weird Symptoms..Docs are puzzled. in Autoimmune Diseases

Yes she is meeting with him for the follow up. They said the tests showed small fiber polyneuropathy. Thank you I will look that up! I was concerned of possible MS also.

Mon, Sep 24 1:10pm · Weird Symptoms..Docs are puzzled. in Autoimmune Diseases

Hi everyone. I posted earlier about hypokalemic periodic paralysis for my mom. A Neuromusclar Specialist in TX (Dr. Trivedi) says does not have it. Since then she has developed more symptoms.
She still "loses movement" from her neck down but it she said this time it feels like her arms and legs are just too heavy to lift. She is completely exhausted and the littlest things wears her out (shower, bathroom)
Some days she can walk with a cane, some days she has to use a Walker or a wheelchair. It seems like every day is different. She also has high blood pressure spikes ranging from (180-200/100-110) and heart rate spikes (100-125 bpm.) Shes had multiple tests done, MRIs, (cervical,thoracic and lumbar) CT scans, blood tests, chemical stress tests, thyroid function tests, 24 hour urine tests, and just recently had an EMG and a skin Biopsy does that did say she is positive for "Small fiber polyneuropathy".
Some days she gets up to walk and can't take the first step, because her legs start to tremble, and she gets very shaky
She says it's like her feet are glued to the floor. Then once she starts going, she either walks good, or walks very slow and shuffles. Sometimes sitting up her whole body starts to shake..
But all of her tests come out normal. Does anyone else have these symptoms?
Can small fiber polyneuropathy cause all of this or do you think there is an underlying cause?
Thank you.

Mon, Mar 5 8:14pm · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

Thank you so much for replying. We are trying to figure out what triggers everything. Currently trying to find a new primary doctor now, since Mayo Clinic denied us. Her "episodes" or attacks were acting in a pattern but now they are coming more sporadic. She's never had her levels checked and I've heard the best time to do it is during the attack..but to find someone to follow through with it has been so hard. So many have diagnosed her with Conversion Disorder and then send her on her way. She has every single symptom of low potassium or Hypokpp.
Now ever since she's been diagnosed with Converison Disorder, no doctors seem to want to help or have anything to do with her. Pretty sure they would have other opinions if it was their loved one going through all of this. 🙁

Mon, Mar 5 11:54am · Periodic Paralysis or Hypokalemic Periodic Paralysis? in Brain & Nervous System

Hi! I am creating this post for my mom. About every 3 hours she loses movement from her neck down for 45 minutes to an hour. She hasnt been able to walk for almost 2 months now. She is only 54 years old and living in a wheelchair in a nursing home. Has anyone ever experienced this before? We have been denied by Mayo Clinic..after being refered by our Neurologist.. which is so frustrating. We don't even know where to turn now. How is she supposed to live her life like this?!