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Unknown Disorder/Disease - Chest and Neck Issues
Brain & Nervous System | Last Active: May 14 4:42pm | Replies (18)Comment receiving replies
@bigscraps, you've gotten a lot of suggestions and possibilities to explore from members here. I hope this can help focus your discussions with your doctor.
I think it is also important to take care of your emotional and mental health. You said you're afraid to go to sleep at night. At the same time, you know that sleep is important for your health. At the risk of adding another medical professional to your many specialists, you might consider talking with a therapist to manage your mental well being as you continue to seek a diagnosis.
Let us know what you found helpful and what list of questions you've prepared for your next visit with your doctor. Who is coordinating your care? Your PCP?
Replies to "@bigscraps, you've gotten a lot of suggestions and possibilities to explore from members here. I hope..."
I have found the variety of test possibilities helpful, and it helps to know other people are somewhat looking for an answer alongside me as even my own family has given up on it. At times, I honestly want to just leave everyone and be alone until we can figure this out. My doctor's doing a normal panel and giving up because it's a normal result is sadly... Normal for me. And I fear no one will figure this out to where I'll have to suffer with this for the rest of my life.
We did start PT like I said before in another post and my chest flared up severely that night. My jaw, my forearms, and left cheek by the left ear are all tingly feeling after it still.
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My primary care was the main coordinator but he didn't know where to go from here after pretty much all of the results were negative. He suggested I find a doctor for rare diseases but the only one in my state has a 8 month waiting time. And, who knows what'll happen until then.
I do have a therapist that has been helping but the issue is I can't easily xo trol my thoughts from panicking when everything flares up again, or if I'm laying in my side or back and it feels like my heart stopped beating for a few seconds before I get palpitations and start to panic because of it. I've been trying to calm down and it has been helping a little, but, until I have a test done to see what medications would work, he insists that I never go back into any anxiety or antidepressive medication as the three they tried cause horrible hallucinations and my eyesight seems even more damaged after being off of them for a month or so now. We did try Xanax, Cymbalta, and then Trazedone, but all had side effects that weren't worth it.