First off, let me say what a relief it is to find somewhere to vent about these things. It is unbelievably stressful to know that something is wrong with your body and have a dozen doctors scratching their heads and making you feel like a hypochondriac. Finally a sympathetic ear!
My first symptoms started in the spring of 2001, just about six years ago. I had stiffness and weakness in my RIGHT hand only. My fingers did not look swollen, but assuming it was carpul tunnel, I saw my PCP. She ran some blood tests and said that I tested positive for Lyme Disease. Weird, because I'm not an outdoorsy person and I don't have any animals, but still treatable at that stage. Started me on antibiotic. Symptoms eventually dissipated, didn't think anything more of it until about 6 months later, was visiting PCP office (saw different doctor) for something unrelated and mentioned the Lyme Disease. New doc looked at test results and looked confused...said that the test results were negative...did not understand why I was told and treated otherwise.
Frustrating, but no big deal. Fast forward to the fall of 2002. I was having sharp pains behind my right eye and right temple. Doc kept calling them "headaches" but it was more like someone persistently poking me with a pin in the back of my eyeball. Referred to Opthamologist...who speculated that my optic nerves were enlarged, HE referred me to a neuro-opthamologist. Pictures were taken, ultra sounds were done, it was decided that it was an anomaly...I was just born with enlarged nerves??? Time to go back to the PCP, ordered an MRI (clean), referred me to a neurologist (quack, quack) who made the whole thing worse by performing an LP and releasing me right away....I was in bed for a month! He then completely fudged through the results...telling me completely contradicting things and then "diagnosing" me with something that I forget what its called, but I later found out that whatever it was only occurs in people that are more than twice the average weight...at the time I was 5'2 and 97 lbs. And he put me on a prescription strength diuretic. Oh yeah, did I mention that he lost his license to practice about 6 months later?
Ok, so said symptoms again disappeared on their own after about 3 months. Pain would return every once in awhile, but was not persistent. About 2 years ago, my right hand started to bother me again, even worse than the first time. It was almost totally incapacitated. Because of family history, I was referred to a rheumatologist. After another battery of blood tests, they shrugged it off as either Reynauds (although my fingertips were not white) or Palindromic Rheumatism. Took some ibuprofun, cleared up after a few weeks. Everything was fine until the beginning of this year.
It started with a little trouble eating my bagel in the morning...I would gag or choke. I thought I was just eating too fast so I tried to slow down and chew more. Over three months or so it got progressively worse...until I could barely eat anything solid, I always felt like I was choking. I finally saw PCP two weeks ago (after new insurance kicked in), full blood panel came back normal, upper GI was clear...no blockages, etc. Right now I can eat a little bit more if I take my time, but it takes so much out of me. I don't have any pain when I eat or swallow, but after a few bites I feel like my mouth and tongue don't want to work anymore. Has anyone felt this before? I feel like the doctors don't understand when I try to explain this.
I have a family history of autoimmune disorders...my mother was diagnosed with Polymyositis in 1999. My CK and RH tests are normal. (That's the first thing they always check) I can't help but feel that somehow all of these things are connected...I just need someone to fill in the missing piece. I'm going back to PCP tomorrow morning...wish me luck... (And sorry I droned on for so long!) If anyone has any ideas or advice as for what to ask or look for, it would be greatly appreciated!