Hi. This is my first post (other than a journal entry) and I could use some advice.
It is assumed that I have EDS III as a primary cause to my POTS disorder. I was a dancer for many years but never had injuries. All my pain I attributed to normal wear and tear. I don't think I'd shown signs of EDS other than being able to turn my fingers into a freak show (no, they don't dislocate - just very bendy) and the POTS diagnosis.
My biggest complaint: BREATHING!!! I weigh next to nothing but it feels like I have 200 pounds sitting on my chest. To take a deep breath, I often have to reach my arms over my head or bend over allowing my diaphragm to push upwards. Grabbing the flesh in my traps/upper back and pulling upward helps, too.
#2. I'm weak in my neck often giving me a "boble head" and weak in my arms and traps. Things didn't start this way, this is a recent (in the last year) phenomenon.
#3. Swallowing feels funny. Not like there's something stuck in my throat but like it's being stretched thin when I sit up. I have pain in my esophagus but not specific to GERD.
#4. I can speak a few sentences and feel like I've just given an hour-long speech. It's actually painful to push my voice through. I go hoarse very quickly. (That could also be because I have issues with my salivary glands - they often don't work well.)
#5. Torso is feeling a little unstable but it's probably from lack of exercise since I can't breathe well.
Below the waist - It's all good. If I could breathe, I could run, dance, whatever. My legs aren't really affected.
I have no one managing my EDS. I've had brain and neck MRIs. A neck CAT scan. Two barium swallows. And of course, everything comes back normal. But are the wrong people reading my scans?
I've heard mention of Dr. Durrani in Cincinnati. Should I contact him for a spine eval? At this point, I don't trust anyone in Michigan to care for me. Unfortunately, I'm getting worse and I'm tired of struggling to breathe.
Any suggestions from those in or near Michigan?