Crawling sensation all over body

Does your doctor think your symptoms may be related to the pinched nerve or thoracic outlet syndrome? @jenniferhunter mentioned something similar in another discussion here - https://connect.mayoclinic.org/comment/606909/ and may have some thoughts or suggestions for you.

Thank you for the link. Not yet have asked but they are from the same areas of the compression issues and google search says they are nerve symptoms.. Will ask them more specifically when i see them next time.

@snowmass
What levels do you have disc issues/compressed nerves? Did you have MRIs of cervical, thoracic and lumbar spine to see which levels may be causing radicular signals to arms/legs/core? Have you ever been tested for small fiber neuropathy (skin punch biopsy) which may be behind your peripheral sensory symptoms?

No one mentioned small fiber testing. Good to know!

What doctor does this test? Neurologist or pain management?
I have facet joint disease and c5-6 bulge and c6-7 annular tear and occipital neuralgia as well as L4-5 annular tear. Several doctors both pain management and orthopedic surgeon and pt have said some other people with these have no symptoms at all..
I do also have myofacial pain.

@snowmass
You will want to go to a neurologist for EMGs for upper/lower limbs, nerve conduction studies and small fiber neuropathy skin punch biopsy. This can help narrow down the source of neurological pain/sensations. I have cervical spondylitic myelopathy at C5-C6 and my symptoms included headaches, neck/shoulder blade pain and knots, harm/hand weakness, bladder issues, and walking/balance issues (felt like I had cement boots on). I had ACDF surgery to remove injured disc and osteophytes/bone spurs and then fused C6C6 and put in a titanium cage to support my cervical spine. My symptoms improved. It is important to address cervical spine issues promptly because they can cause permanent damage to spinal cord/nerve roots that send signals below that level of your spine. I am 54 years old and also need to have surgery on L4-L5 (possibly L3-S1), have idiopathic small fiber neuropathy which caused burning and pins/needle sensations and can cause autonomic nervous system issues (affecting organs/blood vessels/muscles). My gallbladder just stopped working as an example (7% bile ejection when it should be a minimum of 35-40%). I also have bilateral gluteal tendinopathy and bilateral hamstring high grade partial tears (not sure how that happened)! Not sure which surgery to have first and wasn’t expecting to be practically disabled at this age. I was a highly productive professional and now only operating at 10-20% my former self. It really does a number on your mental health. I am taking one day at a time and trying to figure out what to do because I am currently unemployed, a single parent of a teen son and his sole supporter, and no family/support system.

@snowmass
I meant to say my ACDF surgery was at C5-C6 level. Also, I wonder if your cervical issues or if you have small fiber neuropathy are causing your occipital neuralgia. Don’t let doctors say “others with your MRIs have no symptoms at all” because you are you and experiencing your symptoms which are real and affecting your quality of life. Make sure you advocate for yourself, ask lots of questions and don’t let doctors dismiss your symptoms. They need to really listen to your symptoms plus look at neuropathy blood tests/MRIs/nerve conduction test results/small fiber neuropathy results. If your doctors don’t listen to you or are dismissive, find new doctors who actually want to help diagnose and treat you properly to improve your quality of life.

Thank you for your kind thoughtful words. I wondered if my TOS instability was causing a lot of my muscle imbalances and causing the pressure on the back of my neck and tension that pulls the neck muscles even more thus all other symptoms including swaying feeling when walking and inflamed face when neck is not in a good position from the pull. I went to an ENT recently for light headedness/imbalance and he recommended to see a PT with functional technique specialty that had positive results for some other.
I will seek out another orthopedic doctor to get evaluated again.
I am sorry for your difficult to say the least situation…. I just returned to work from STD because i could not really find a doctor who felt i should be on STD and work has been very accommodating but it’s personally discouraging to feel my limitations. But i am trying to stay positive reminding myself it’s a long battle and will get better.
Thank you again.

Did you also experience cold nose and selling hands with cold burning sensations when neck was uncomfortable?

@snowmass
I do get cold hands and feet but also have thyroid issues. My cervical spine issues affected head, balance/dizziness, hand weakness which caused me to drop things and worsened my handwriting (I looked back at my old checkbooks through present and noticed a worsening in neatness). My small fiber neuropathy is also affecting my hearing and blood vessels which may be tied to cold extremities. I also had facial rashes that seemed tied to trigeminal nerve (burning mouth syndrome).