Hi everyone, I'm going on 30 and am coming to terms with the severity of my symptoms. I'm worried about losing the use of my arms and hands. My condition is neurological and has been misdiagnosed as tennis elbow and carpal tunnel as well as "you're lying about how much pain you're in." I'm living in an RV for the foreseeable future so no hot baths to help. My PCP just wants to run EMG after EMG, which haven't been covered by my insurance. It's frustrating and the gabapentin makes me sleepy. I'll be looking through this forum but any good recommendations or just condolences are welcome!

Sharing my reply here in case you didn't see it yet..

Explore the sticky threads on our TOS forum..you will learn so much to help you get best care..
Also use our search tool using double or triple crush syndrome..

With TOS EMG/NCV will rarely show anything unless you are also having nerve impingement or C spine impingement..
Few Drs are fully knowledgeable with TOS, or only have limited /biased knowledge and will not be able to correctly dx you..
They often wait until it is too late for expert PT/chiro rehab and surgery is the only option left.

There are many versions of TOS and mixed symptoms for TOS--
NTOS- nerve symptoms, VTOS- blood flow compression symptoms as well as a mix of both..
The sticky threads or search can find info on those topics so you can find what might apply best in your case..

Any Xrays or MRIs yet? Ask about it..
That is usually next step, extra cervical rib, large bones compressing nerves or blood flow in collar bone/upper chest areas.. also could rule out any C spine issues..

Any PT evaluation yet? Ask about it.. Or expert chiro..
Good ones can find a lot more than a dr that does not do the positional test or palpate your muscles..

We also have some older posts with symptoms listed, those can help you see what fits or not..

Don't stay with a dr or anyone that is not helping you..your time is important don't waste it.

Thanks! I'm definitely going to look around on here. Unfortunately I don't have insurance at the moment and it's unclear when I'm getting it again, but my plan was at least to find a pain specialist. Thanks for pointing me in hopeful directions.

Finding Health Insurance | USAGov
If in USA... The link should be helpful with information.