Discussions By Condition: I cannot get a diagnosis.

too many doctors, no answers

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • February 12, 2007
  • 05:18 PM

It has now been almost a year since my symptoms started. I have always been prone to respiratory infections, so when I got one that wouldn't go away last January, I didn't think anything of it. I went to my doctor and had 2 or 3 series of antibiotics. The first week of February, I went to put lip balm on and couldn't spread it with my bottom lip. I use lip balm religiously, so I noticed this right away.
I called the nurse line on the back of my insurnace card & they told me to go to the emergency room. There, I was dx with a "minor case" of Bell's Palsy. When it didn't go away, I called my doctor. He said to go back to the emergency room, where they gave me a different treatment for Bell's Palsy. I had positive results with the steroids. I couldn't sleep and I lost weight, but it worked for a little while. I went through a massive job change in April and didn't really pay attention to my lip situation. In May, I got ear infections in both ears. I went to the doc, got 2 series of antibiotics and steroids and got very dizzy. I just attributed it to the infections. By this time, I asked for a sleep aid and the steroids had me 20 lbs lighter than I was in January. About this time, my GP referred me to an ENT. He couldn't find anything specific, but wanted to get started with a bunch of test: all relatively normal. After that, I was sent to a neuro-otologist (sp?). He ran more tests, but couldn't find anything specific. He put me on another series of steroids. About 2 days later, I went to California to see my sister (I live in Missouri). While I was out there, the shaking started. It seemed to be exacerbated by stress, not enough sleep, or heat. My husband and I were so frustrated with my GP repeatedly sending me to the ER, so I found a new GP. He ran a wide variety of bloodwork and referred me to a neurologist. The night before my appt. with my neuro, I got so shaky that I couldn't walk down the hall in my house. I told my husband we would wait it out until the AM. When it didn't get better, he took me to the ER. THe neuro was disgusted @ having to see me in the ER. I was admitted on a Wednesday, had a wide variety of tests (MRI w/ contrast, spinal tap, several series of blood tests) to check for MS and was released Friday, being told that it was all in my head. I went to my GP thoroughly ticked off. After this, I was referred to a new neuro. He did a physical and took 1 look @ my test results & requested a chest CT to check for sarcoidosis (thankfully, he figured out right away that I'm not crazy). They found an abnormally large thymus, but no sarcoid. Then he checked for vasculitis (also negative). His assistant said to follow up 6 mos. from my CT to check my status. Since about Thanksgiving, I have been struggling w/ extreme exhaustion. If I exert myself at all, I get so weak that I cannot even sit up without shaking. I decided to follow up with my GP. He looked @ the tests from my neuro, told me I had elevated protein levels and in conjunction w/ my thymus problems, he wanted to ck for Myasthenia Gravis: negative too. Now they are checking for FSH (from what I understand, a type of MD, but the symptoms do not seem to match). I have to follow up with my neuro this month, but really feel so exhausted that I sleep 12 hours a day and have a hard time being remotely physically active. I have gained back the 20 lbs I lost last year and really feel like my quality of life has diminished dramatically. Please help.

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