Hello all. I thank you in advance for any opinions here. My hell started 5 years ago. I was 35 now 40. Ill try to make it short. Five years ago in the middle of the night I woke up with both hands dead numb. I couldn't shake it if, and in the morning both hands were inflamed swollen and numb whenever I raised them such as driving, being on my phone ect.... I could barely touch a thing. I couldn't even open a door on my own. This went on for 2 weeks and the inflammation went down but not the numbness. I first went to hand specialist...negative CT syndrome....went another few months with no clue what could of happened to me. Next a rheumatologist at university of Miami. She did a slew of bloodwork. Lupus, HIV, RA factor, inflammation,ect.... Perfectly normal for everything. No thyroid issues , not even inflammation showed.... Ok. So I go on to a Neurologist, and he does MRI and testing for MS, nothing negative. I wait a year and the numbness turned into pain, tight, swelling ripping whenever I'm not moving my hands..(all night during sleep) or anytime they are still. Numbness not so much an issue these days....after rounds of the same specialists over and over in different offices for opinions I kept hearing I'm a medical mystery. And nobody knows what it is. I recently moved and went to general practitioner that feels its auto immune...did the whole blood work up AGAIN normal perfect...EMG normal, had the needles and the electrode stuff done..head to toe. Negative... She sent me to a Neuro surgeon and he looked at my EMG and records ( she tested for all metals as well) and he sent me to yet another hand specialist thinking its arthritis of some sort because my fingers are swollen like sausages. The hand guy looked at my records and my hands did X-rays and said perfect joints..no arthritis ...he looked at my hands with ultrasound right there in his office and saw swelling around the nerves and called it peripheral neoropathy...then I went for opinion number 1000 it seems and they are an integrative Medicine place...they all said not PN ...negative nerve study and are doing food allergy testing. I'm so confused....can you have it with a neg study? And my pain...not numbness as much anymore but the tearing burning and sometimes fingers get stuck bent and almost feel dislocated! And all night sooooo swollen and stiff. I'm losing my mind. Not sure what to do.
sorry for any mis spelling. I guess I'm wondering if this sounds like PN or something else? Any answers to any of my questions I appreciate... I'd like to know how neurologists and all didn't say PN all these years...but the hand surgeon said it was... Thanks guys and sorry so long