undiagnosed movement disorder

Interesting reading that about the DAT Scan though, it’s not a definitive diagnosis for Parkinson!

Maybe never was offered by u of m

I had the pet scan

What did your doctors learn from your PET scan, @cathy514?

Hi @barbbie,
I merged your discussion about dysautonomia or autonomic dysfunction to this ongoing conversation, so that you could reconnect with the members participating in this discussion. Simply click VIEW & REPLY in your email notification to find your post.

<p>I have suffered with peculiar movements for years now. I have been to Boston and New York City and the National Institute of Health only hearing you have a Psychogenic movement disorder. I knew that wasn't so because it was triggered by touch usually around my right shoulder, trapezius muscle area. It started after my second concussion and was just in my right shoulder, arm, and hand. After my third concussion, it went body wide. The contractures are painful and last a long time rendering me incapable of moving. I went to an appt with Core Therapy where PTs use manual therapy. When my body started very quick jerking I asked what he thought it was. He told me my nerves were hyperactive. A short while later while working on my neck and right shoulder area everything stiffened in position, my right hand in a claw position. The contractures went down my whole right side. Again I asked for an explanation. He said my nerves were super sensitive. He felt they could be calmed but it will be along, slow process. I looked up info - http://www.keystonensc.com/downloads/epa-nerve-hypersensitivity-syndromes.pdf and after reading that I went to -https://naturalsolutionsforahealthyyou.com/using-diet-to-balance-the-sympathetic-and-parasympathetic-nervous-systems-part-2-of-3/<br />Here's a good explanation if you have been told like me you have dysautonomia or autonomic dysfunction - https://www.linkedin.com/pulse/symptoms-overactive-sympathetic-nervous-system-you-headed-chad-oler/<br />Reading all this has made me hopeful that with their help at Core Therapy I will make some forward progress no matter how slow.</p>

@barbbie Glad to hear you advocated for yourselve and did your own research. Smart lady

I had an appointment at Cleveland Clinic with a neuromuscular specialist. It was surprisingly one of the worst experiences I have had with a physician. He was dismissive, condescending and uncompassionate to my suffering. I will continue to see my current neurologist but my muscle pain and weakness continues to worsen. I have an appointment with a spinal neurosurgeon in May. And my hematologist as referred me to a gastroenterologist. I currently have vitamin b12 and iron deficiency. My thoracic MRI showed some bulging discs but no spinal cord involvement. I'm not sure what the surgeon will say regarding the discs. My blood work also showed a positive RA factor.

I'm scheduled for my regular appt with the movement specialist in April. I'm hoping that he will agree to an MRI of the brain as its been two years to check for changes. I also want to be tested for lyme disease.

I'm very discouraged and wondering if I will be living with these symptoms for the rest of my life. It is very depressing.

Iron Deficiency? Have they found out why? I had anemia but I had bleeding internally from AVM's. Also has your thyroid been checked? I know this answer is of no help but I'm kind of going through the same thing and am waiting to get a EMG. Had a brain MRI, Cervical Spine MRI and an EEG done. Balance issues, weakness issues pain in joints issues plus depression/anxiety.

Not yet. I assume the gastroenterologist will do some investigating. Vitamin B12 deficiency can cause demyelination similar to MS plus muscle weakness and fatigue.