Hi,

I am a 33 year old male with a history of neuropathy, mostly on the right side of my body (hint hint...it must be something physical). I am above average physically, playing sports for 30 years until symptoms got really bad. I suffer the most in winter with terrible Fibromyalgia and migraines. Another clue, the nervous system hates the cold it would seem. After about ten years of the same symptoms worsening with time and going to 100 different doctors and 5/6 surgeries to just treat the symptoms, I finally found a peripheral neuropathic specialist who diagnosed me with neurogenic TOS. The symptoms include weakness in 4th and 5th digits of both hands. I get lightheaded and lose all blood flow to hands when raised above head for about a minute. In addition, I suffer chest pain (pseudo angina), wrist pain, excessively sweaty hands/pits, migraines (caused by nerve irritation) a few hours after reaching/lifting stuff. The worst of the worst is BEING COLD ALL THE TIME! I may actually move to a warmer state just because of TOS!

If you are still reading, congratulations for having a long attention span. I have no social life, limited job possibilities, lots of psychological trauma, and have been alienated from many people due to my condition. I've had it from a young age, I would guess age 5 or 6. If the medical community was more aware, a simple two-minute (EAST) test could be performed by all neurologists that would greatly help in diagnosing this disorder. Unfortunately, many neuros do not believe in this condition and will not treat it. Even at prestigious clinics, such as Cleveland Clinic, many doctors are unaware of its symptoms or existence, even neurologists. Your mileage may vary with different doctors, so do not give up! Pain programs will help, but pain will get worse over time. The pills can only do so much without knowing the true cause of the pain. My hope is one day, each patient will have enough time and resources to start making their own educated diagnoses and be able to find competent doctors to confirm or reject a diagnosis. "Differential Diagnosis" is a term that will become much more popular in the coming years and offer great value to both patients and physicians with complicated disorders and wide ranging symptoms. Thank you for reading this long intro! I hope for the best for your personal situations. It will take both skill and luck on your part to find the best treatment options.

See PubMed for relevant journal articles related to TOS.