Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Old 02-26-2017, 05:19 PM #1
kasl24 kasl24 is offline
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kasl24 kasl24 is offline
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Join Date: Feb 2017
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3 yr Member
Default Getting NTOS Diagnosis


I am looking for some advice for those who found it difficult to get to the diagnosis of NTOS. Here is a bit of background on my current situation:

In Oct. of 2015, I suddenly started having pain in my R shoulder, which quickly began radiating down my arm and into my hands and fingers. No obvious injury or trigger. I am an elementary school teacher, so I don't have specific stress on any part of my body, but I am moving around a lot during the day. Within a week, I was also having a lot of pain in the back of my neck, and was having symptoms on the left side too. A combination of burning/numbing nerve pain, muscular pain, and muscle fatigue. The pain was so extreme that I was barely making it through the work day.

The pain gets a lot worse with activity, particularly those that involve raising or my arms, like driving or brushing my hair or lifting things. It hurts when anyone squeezes my arm or hands, and my ulnar and surrounding nerves are ultra sensitive. Typing and writing by hand always makes the pain worse quickly.

I went to see my regular chiropractor, but her treatments weren't helping much, so she sent me to my PCP and eventually a neurologist for a bunch of tests, all which came back negative: bloodwork, x-rays, MRIs, EMG and nerve conduction... etc. My neurologist said I must just be having muscle spasms and sent me on my way with a prescription for muscle relaxers.

Along the way, I googled my symptoms and found NTOS - which just seemed to match my experience so closely I couldn't even believe it. I brought the idea to my chiropractor and she started deep massaging my scalene muscles, which brought me a modicum of relief for the first time in months. I actually hadn't even realized how much pain I was having in the front of my chest because of the rest of the pain, but my scalene muscles around my collar bone are incredibly tender. I also got some pain relief from doing neck traction with my physical therapist.

Anyways - I have seen several PTs and neurologists at this point, and they all dismissed NTOS out of hand because all my testing came up negative. My current neurologist says he thinks I just have central neuropathic pain that was triggered by last year's flu shot and wants me to go on Lyrica.

Interestingly, I was getting a massage this winter and the masseuse asked me right away if anyone had diagnosed me with TOS when I told her about my symptoms. She and my chiropractor are the only ones who thought this could be a real possibility.

I am still convinced I might have NTOS, and from what I have read, it is common that doctors who are not specialists in TOS do not diagnose it correctly. Is it worth seeking out a TOS specialist for an "umpteenth" opinion if so many doctors have dismissed NTOS?

Thanks for any advice or insight.
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lot, neurologist, ntos, pain, tos

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