Discussions By Condition: I cannot get a diagnosis.

Photophobia, and everything else in the book.

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • August 8, 2009
  • 05:24 AM

This is going to be a pretty long post, so prepare yourself. I've been experiencing some ongoing symptoms for about 4 months now. I've been to multiple doctors and a couple ERs and Urgent Care places. They've run a ton of tests and don't seem to be any closer to any sort of answer then the day I walked into the ER the first time. Here's a list of symptoms I've been experiencing....Photophobia, High Blood Pressure with very inconsistent rates (no history of HBP), Headaches (seem to start at the neck and radiate up and out on head), sore spots on back and spine (between shoulders & small of back), lesions on arms and modeled/blotchy (literal white blotches) skin on forearms, I've had bags under my eyes since this all started (never had before), I have problems "processing" car rides during the day (some neurological disturbance), fatigue, head pressure changes, and this all seemed to start when I began to hear fluid moving in the back of my head or neck area (which I can hear through my inner ear). I had sinus problems before this all started and they seemed to go away (that was about a month before this all started), then I went on vacation and had very bad diarrhea for 3 days up until about 24 hours before I started experiencing my current problem. I'm not sure if the sinus & diarrhea have anything to do with my current state, but I figure they are worth mentioning. I have no other significant history of illness and my family has no relavant history of problems. I've had these tests run...EKG, Blood Tests (x a million), Chest X-ray, CT scan, MRI/MRA, Urinalysis, eLISE (LYME), basic Neuro-exam/physical, Thyroid, Adrenal, Spinal Tap, Stool and sputum....I'm sure there are some more but I can not list them off the top of my head. The Elise Test for Lyme was actually my idea and seemed to have the most related symptoms to what I am/was experiencing and that was about 3 months ago. The last Doctor I saw perscribed me some antibiotics for the possibility of a sinus infection that was still going on. One of my neighboers said he had experienced a lot of the same problems and that Doctor had diagnosed it as a sinus infection, but he said that he was on antibiotics for 3 months. So I started taking the antibiotics and things seemed to be going well, but after two weeks, things took a bad turn for a couple days. I then went on a different anitbiotic and the same thing happened after about a week and a half. Both antibiotics seemed to be helping for a while, but once my system caught up with the medicine then I would have problems again. I'm not sure if that had something to do with (the fact that I wasn't passing stool 5 x a day), but that's why I requested the stool sample. That cameback negative. This leads me to believe that it still might have something to do with fluids in my system. I took hydrostatic Blood Pressure (lying, sitting, standing) and they seemed to be pretty inconsistant (not over 30 points different though). Also my BP Rates fluctuate from as high as 165/113 to as low as 95/60 (and I'm on BP pills as of 3 months ago). I don't get any of it. It would be nice to have any sort of answer.....or suggestions. I shouldn't feel bad though, because the 10 doctors I've seen don't get it either, but atleast for them...they get paid a couple hundred dollars an hour to deal with this. As for me....I'm running out of money, patience, and time. Any help would be appreciated.

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  • Also the symptoms tend to be more severe after I wake up or eat. I imagine this has to do with posture and GI stuff. For some reason at night they are less intense and I'm in a state that is actually not totally disabilitating. Please, if anyone has any comments....I need the help. My job is at risk and that would be the end to my health insurance also, which has saved me up till now. Thanks
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