Originally Posted by piano1

This is my first post on any forum regarding my experiences of the past 15 months. I hope that it will help others find the answers to their health questions and possibly let them consider a path that may provide relief for their symptoms.

In July of 2012 I experienced strange nerve sensations: tingling tops of forearms (symmetrical), buzzing tops of feet (symmetrical), tingling cheeks (symmetrical), random bee sting sensations, random muscle twitchiness, electric shock sensations in arms, intense charlie horse-type aches in right triceps (would last for 10 days at a time), lump in throat sensation, tingling on backs of hands, tingling in fingertips, tingling in tips of toes, among other symptoms. Some of the symptoms would shift around every few days, others would just linger.

I had a brain MRI which showed white spots which led my family doctor to diagnose me with MS. I was emotionally rocked by this diagnosis. I then saw a neurologist who, after examining me doubted the MS diagnosis. He re-ordered a brain and spinal MRI with contrast and over-ruled the MS diagnosis. He said some people just have white spots and it doesn't mean MS - and I'm one of them. He said that I had irritated nerves for whatever reason. He hoped the symptoms would fade.

Over the next 6 months I saw him every 6 weeks or so. My symptoms had not improved and I was kind of obsessed that I may in fact have MS. Each time he assured me I did not.

At one point he prescribed Klonopin which I took and it completely fixed my strange nerve sensations. I was a new person, but I did not want to become dependent on Klonopin, so after two weeks I started to ween myself off. The symptoms came back. The neuro suggested that perhaps anxiety over my initial MS diagnosis was driving some of my nerve problems. As unlikely as this sounded, I was willing to consider it. For the next 5 months I was determined to try to just ignore my symptoms and rewire my brain.

It didn't work. Finally in June of 2013 I was in the midst of an intense flare up and could not find relief for my deep and saturating right arm pain. Out of exasperation I sat down on the floor on my knees and curled up like a bug with my forehead on the ground and my arms curled in, fists by my chin. I was astonished that my arm pain vanished. I sat up and my pain returned. I laid down and it went away. It was a major breakthrough!

I did some research and learned about TOS. I went back to the neuro and told him I thought I had TOS. I have the classic slumping posture, head and neck forward, broke both collar bones when I was little, very little shoulder flexibility, hands go numb when I hold them above my head in yoga, etc. I tested positive for TOS and started PT.

The PT sessions have involved stretching everywhere but my shoulders. Spinal twists, hamstring stretches, side bends, cobra, and other exercises have loosened up tight areas in my core, creating more slack for my nerves in my collar bone areas. Directly working on my spine with foam rollers was too intense and caused flare ups that lasted 3-4 days.

Five months later, I experience a mild flare up only once a week that lasts 24 hours. Most of the time I now feel 100 percent. I feel very fortunate. My flare ups pretty much always are triggered by sitting in a theater watching a play, or sitting in a movie theater, or sitting on the sofa. In those scenarios my right arm starts to ache and I can't get relief as long as I'm stuck in a chair. Eventually the right arm aches lead to cheek tingling, feet buzzing, and so on.

I had been an active weight-lifter for the last 20 years. I had been doing lots of yoga throughout the past year thinking it was helping my symptoms. It turns out that with my limited spine flexibility, yoga was actually exacerbating my problems. All of the arm-lifting and down dogs were putting pressure on my TOS nerves.

I have not exercised or done yoga in 5 months. My muscles have atrophied and my flexibility has greatly increased. I miss my muscles but I don't miss my pain.

Had I remained on the Klonopin which masked my nerve pain my symptoms would probably have worsened. I feel very fortunate to have solved this health puzzle.

For all those with nerve issues, researching online can certainly be a blessing and a curse. I was heading down many dark roads before I discovered TOS and eventually diagnosed myself. I hope others on this board find relief for their problems and are able to return to their lives.

Peace.