I am waiting to hear back from the Chiari Clinic in Wisconsin. I was told I "may have a small Chiari" which set off some red flags... That's not how to measure.... And size doesn't matter!!! I just need a diagnosis, because the neuro PA here, that I am not going back to see, says all my symptoms are.... Wait for it..... Anxiety! I had a sleep study done & it said mild sleep apnea (obstructive) but of course he went back to anxiety for everything!
I am still doing PT for my shoulder, it's been quite a few month now.
About this time last year my finger turned purple, swelled & hurt! It lasted over a month! I went to the urgent care & was told I was having an allergic reaction & take diphenhydramine. I went back to UC and got steroids & an xray that was normal. I went to the ER & they absolutely nothing & charged a fortune. He told me if it was an injury it would be necrotic. I finally got in to a family health doctor and he did another xray (normal) and consulted a vascular surgeon and ordered a doppler to check for a blood clot (normal) and did a bunch of blood work. Said I had Raynaud's maybe, and said it looked like "sausage fingers" or psoriatic arthritis.... Nope! My CBC came back abnormal & I started Bactrim.... And felt like I was going to die by my ribs crushing my lungs to death aka an allergic reaction. I got a call back from the Internal Medicine clinic that said yes I can be accepted as a new patient & can be seen asap due to a cancellation! My new PCP changed my med to amoxicillin ( I can't take Keflex or Sulfas) and I started to improve, added on a few more days & was fine!
Fast forward to now, ring finger DIP joint swells & turns purple so I go to my PCP & she says oh 5 days like this must be Raynaud's (uuummm no I don't have gangrene, but if it really was Raynaud's you just did jack shot for it, thanks lady). I ended up at UC & he said must be a soft tissue injury, go to a sporting store & get a finger sleeve. So I drive, in pain, to 3 sport stores & they haven't ever heard of it! It has now been 4 weeks of my ring finger purple & swollen at my DIP joint & now 5 days that my same damn pinkie is now swollen, purple, sore & getting pins & needles. So I go back to UC & get..... You guessed it... Steroids! Is this sounding familiar to you too?!! But he also ordered a nerve conduction test. I see my PCP this week. Steroids hurt my stomach no matter what & make all of my joints ache. My finger seems exactly the same as well.
I have EDS type III and my chart says "hypermobility syndrome" even though I went to an EDS geneticist after waiting 8 months... And they won't change my fricken record!
I have a mood disorder due to a chronic illness & my neuro PA says I have anxiety. I mean like the guy is obsessed with anxiety, he should have been a psychologist or psychiatrist because it's all he ever fricken talks about! I told him I had a horrible day where I got lost, didn't even know what store I was in, completely disoriented & he tells me I had a migraine, or anxiety. If I have a migraine I can't drive!!! He wrote my diagnosis as migraine with aura.... i have told him MANY times I no longer have auras, since April 2015 they stopped. I do however have occipital neuralgia or maybe it's pain caused my the Chiari, who freakin knows?!!
Why is it such a struggle for diagnosis? Why do I get questioned when asking for another set of finger splints? Why do they treat females like we imagine every damn thing? Why do they become doctors? Why do they dismiss us over & over until we end up with severe injuries or infections? If my insurance will pay for things why do they tell me to buy braces OTC & have them make me worse? Why does my physiatrist understand? Why don't my rheumatologist, neurologist, PCP, ophthalmologist or any of my other doctors ask my physiatrist questions? Why don't they communicate with my geneticist? WHY AM I STILL TREATED LIKE A HYPOCHONDRIAC? What more do you meed besides my EDS diagnosis?
