Hello neuro talk community members
I am grasping at straws here so here goes. Four years ago I was in an auto accident (rear ended) and jerked my neck plus hit my head on the left window of my car quite hard...had an egg sized hematoma. Never lost consciousness or anything like that. The kids that hit me drove off and I was a hit and run. Anyway, had some neck tenderness that night but that was all. Did not go to the doctor as thought I was okay (it was low speed impact). Several days later neck really started hurting so went to ER and had a cervical spine series which showed degenerative disease (I was 61), some osteocytes, some bulging discs but "nothing serious". Sent to physical therapy and after about a month developed tilting to the right and neck spasms. Insisted on seeing a neurologist, had a brain MRI and Neck MRI and diagnosed with cervical dystonia/torticollis. Now receive Botox injections in my neck every three months for this (no, not cosmetic although one side looks better than the other). Approximate 2 years ago started with burning feet, legs, hands and arms. Has progressed and I am miserable. Have seen a peripheral neuropathy specialist (neurologist) and ALL tests for peripheral neuropathy have been negative including EMG, NCV, skin biopsy (supposedly the gold standard for this condition), glucose tolerance, heavy metals, B12, etc...what I feel was an excellent workup but still no answers. I look find but am really uncomfortable (allodynia, hyperesthesias, burning, cold areas in my arms and legs that feel like they are burning but cold to the touch). I am a member of NSTA (National Spasmodic Torticollis Assn) and in their recent quarterly bulletin they spoke of a physician, Dr.Mark Cooper, a biologist and medical researcher at the University of Washington in Seattle who wanted to bring attention to our members of CRPS...and a possible correlation to the cervical dystonia/torticollis. Does this sound like a possibility? I am not getting any relief with the intense burning I feel, and the inability to wear many types of fabrics I used to be able to wear. I am going to attempt to contack Dr. Cooper and see if I can find more information. In the meantime what type of neurologist would one see for this. My local neurologist, the peripheral neuropathy neurologist and the Movement Disorder Specialist...all have never even mentioned this condition to me and yet a lot of what I read seems to be related to what I have. Please, any thoughts. Thank you.

Hello and Welcome to Neurotalk - I am so very sorry to hear about everything that you have and are still going through . I really hope that things get better for you soon and that you can start a treatment that takes away your pain and symptoms.

Some of the symptoms you described sound like CRPS/RSD however they could be any illness and it doesn't mean that you do have CRPS. I have CRPS type 1 in my left leg and right arm, I developed it when I was 12 years old after an ankle sprain and I am now 13.

The main symptoms of RSD are:

Burning pain
Allodynia (hypersenstivity)
Muscle Spasms (Dystonia's, Myoclonus etc)
Hair and nail changes
Colour and temperature changes
Swelling
Osteoperosis (this usually develops after years of RSD)
Lesions
Depression

I was told by my Pain Management Doctor that to get a diagnosis of RSD, you have to have at least 5 of the above symptoms.

If I was you, the first thing I would do is get an appointment with a Pain Management Doctor. They are really good usually and often diagnose CRPS/RSD. Unfortunately at the moment, there is no tests to diagnose RSD - diagnosis is usually based on symptoms however your doctor will probably do many tests to rule out other possible illnesses. When I was diagnosed with RSD, I just had routine blood works, MRI, Ultrasound and X-Rays as I was told my RSD was "text book" (I had all the signs).

I hope and pray that you don't have RSD and that whatever is the matter will be able to get sorted real soon and that you will be back to normal. Please know that we are all here for you and if you have any questions, please don't hesitate to ask!!

Love and best wishes,
Alison.