" I've seen a neurologist, three physical therapists, MRIs done, X rays done, blood tests done, EMGs done.... no answers. I am dealing with pain, weakness, and dysfunction that people my age would never imagine. I have symptoms of ulnar, radial, and median nerve entrapment. Even raising my arm slightly reproduces my symptoms.
... I try to keep this away from my family, especially my extended family. They cannot see the condition and therefore it is either all in my head or I am really okay and faking it for attention. Regardless, any help/wisdom would be appreciated."



Hello Jack,
Not sure about wisdom but will take a shot.
I wonder have you or any of the medical folks mentioned TOS? TOS is not common and they don't usually know about this situation or look for it. You may need to see someone who has experience with TOS.

Have you looked through the resources, the sticky notes? There are a bunch of posts at the top of the forum. It needs to be cleared of some old bad links but there is a lot of great info.

Yes, I am familiar with the "barely move your arm and the nerves begin complaining" portion of your account. I have an entire choir screaming in my body from tip of fingers to face. It seems like when you try to shut one up the others get louder.

Being misunderstood by the medical field is also familiar. I have yet to talk to or read about a TOS patient that didn't have their sanity doubted. In a herd of horses we are zebras. Docs aren't used to seeing zebras...they see all the regular horse problems everyday so their mindset is horse. All day long, year after year they see horses. Then we show up and they don't know what is wrong so WE must be crazy. We just don't meet their expectations.

Family members are even less prepared for TOS. They are geared to appllying a little antibiotic cream and using a bandaid. The worst woud be a broken bone...but then you get a cast...it when it comes off, voila, you are all better. They just aren't prepared for such an unusual situation. That's why I think these forum places are so important, you can talk to other zebras.

I was injured last February but only recently diagnosed with neural TOS with possible vascular component. Its not fun. I have gone through a dozen wrong Dxs, multiple drs, unneeded procedures, OT/PT therapists, specialists and after almost a year I think we finally have the right dX.

You are so very young. Do you know if they have looked for a cervical rib? I cant tell you not to work out but I will give you the same advice I give my kids (your age) Honey if it hurts don't do it.

I have found that heat helps a lot, rice bags and hot bath/shower. Nerve pain is a royal thrill which is not effected by any meds I have found OTC. I do stretches many times a day. Check out *reputable* sources for stretches...Mayo clinic, John Hopkins etc. I also do a lot of yoga with modification to moves that hurt....back to the if it hurts advice. The ones that I do most often are wall/corner stretches and corpse yoga pose. I make sure to keep moving all I can to avoid freezing anything. Ask your dr for specific stretches he wants you to do. I was told no strengthening until I have range of motion without pain. Sure hope that happens one day.

I am sure others will pipe in that have much better advice and real wisdom.

Good luck Jack, please keep us updated.