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Peripheral Neuropathy and benign fasciculation syndrome.

Neuropathy | Last Active: Mar 6 11:38pm | Replies (101)

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@jenniferhunter

@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of the brachial plexus nerve bundle that passes between the rib cage and collar bone and goes to the arms, and it is aggravated by arm position. I have TOS, and it causes the front of my chest and neck to be tight, and activities with raised arms like driving a car or sleeping with arm positions that raise the arm in relation to body position will bring on symptoms. My hands used to turn blue and get cold because it decreased circulation. TOS is often best treated with physical therapy and myofascial release which is what I do, and I am making progress with my symptoms. When you have a forward head and shoulder position, it causes issues. Try standing sideways in front of a mirror and look to see if your shoulders line up directly under the center of your neck. That can indicate that the muscles in front are too tight which is a problem with TOS.

It's difficult to get an accurate diagnosis of TOS because it is misunderstood and perceived as rare by doctors. It isn't covered well in medical schools. I was diagnosed by a neurologist and he raised my arm while checking to see if my pulse would diminish and it did. At Mayo, a neurologist listened to my pulse in my neck and had me turn my head, and it also stopped my pulse. I came to Mayo as a spine surgery patient 3 years ago, and they also evaluated my TOS because of overlapping symptoms with a spine issue. Look for specialists for TOS at teaching medical centers that list it as a condition that they treat. A lot of doctors miss it and don't believe patients who talk about the symptoms. That happened to me after carpal tunnel surgery and that doctor was irritated when I came back after surgery telling him that my hand was turning blue. He took my pulse and told me I was fine. When I got a TOS diagnosis from another doctor and told this surgeon, he wanted nothing to do with me, and would not authorize physical therapy because he said he wouldn't be able to evaluate if it was helping me or not. He had completely missed it. It's easy for a doctor to think that symptoms in the hand are only carpal tunnel, but they can be caused anywhere along the nerve path and the same symptoms can be caused by TOS or a spine problem. In my case, I had symptoms from all of this. It's important to figure out all the places that are generating nerve pain before a patient decides to proceed with surgery. Surgery might not help at all, or may not relieve all the symptoms (as in my case) if they miss a problem with overlapping symptoms. You can have a problem of physical compression of nerves in addition to other neuropathies, and it might be worth looking into physical possibilities that can be helped with MFR with physical therapy.

Here are some links about TOS and myofascial release.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Replies to "@iceblue @sherryw I wanted to tell you about thoracic outlet syndrome which is a compression of..."

Wow! Thank you for all of this information!!! It's a lot to process, but I will definitely take the time to explore this.

My goodness folks, this is so me! My PT was working on these areas and he really put a hurting on me. Unfortunately, insurance cut my PT visits off. So I wait for new year and Medicare. Hoping to get back on the MFR grind.

very interesting. i was just at mayo clinic a few weeks ago as ive been dealing with twitching, numbness and pain for months now. ive had several EMGs and no indication of ALS, but neuro at Mayo tested my pulse in numerous positions and believes there could be TOS. first i had heard of this possible diagnosis. i am seeing a vascular surgeon tomorow for additional tests to confirm.

Question, did you have any muscle twitching with your TOS? ive had twitching for months primarily focused in my arms