I still want to attempt to connect to others, even though no one responded to my first post so here we go!

I wanted to share an update because my symptoms have continued to progress, but I still don't have a clear diagnosis.

My symptoms started around October 2025 with numbness and pain in both hands and wrists. Since then, they've progressed into my arms and shoulders. I now deal with burning/shooting pain, numbness and tingling, heaviness, weakness, shaky/twitchy hands, limited movement, and changes in temperature and skin color. Cold, touch, activity, and certain positions can make everything significantly worse.

I was initially diagnosed with CRPS, but that diagnosis has since been questioned, since there was no onset of injury. Since then, thoracic outlet syndrome has been ruled out.

My EMG showed bilateral carpal tunnel, but no radiculopathy or generalized neuropathy. I've done extensive OT with little improvement, and trigger-point and cortisone injections didn't help. Vascular testing also didn't find an arterial cause.

My newest MRI showed positional compression of the brachial plexus and narrowing of the subclavian vessels, worse on the right when my arms are positioned overhead. My vascular surgeon is still not convinced this is TOS.

I'm also being evaluated for a 6 mm Chiari I malformation and have developed more frequent headaches and symptoms, including headaches triggered by coughing, laughing, and breathing. I'm scheduled for further CSF-flow imaging.

And most recently, I had an episode where my blood pressure dropped to 71/58, causing significant dizziness and near-fainting, although I didn't lose consciousness. It improved after lying down, but I still felt off afterward.

I've seen neurology, rheumatology, pain management, vascular surgery, hand specialists, and so many others. I'm now pursuing further evaluation at Cleveland Clinic.

At this point, I'm really just hoping to find some answers and a treatment that will help me get back to functioning normally.

I am really looking for a local support group, although I am not confident I will find one in my area of Illinois. I am looking for humans to connect with.