- CASE FILE
For 6 years, a seemly random collection of symptoms like infections, exhaustion, syncope, pain, epsidoes of total inability to use muscles +
ABOUT THIS CASE FILE
As the years have progressed my symptoms have become more severe and the doctors all tell me that 1. there's nothing wrong with me, 2. they don't know what's causing the symptoms, and 3. they can't help me and to see someone else. I'm a medical hot potato.
The first sign that something was wrong was when I got 6 staph infections in one year. At this time, I was working out 4 days a week as an aerialist and was told that it was because I was spending too much time at the gym. The next sign was that I was gaining muscle strength but losing technical abilities. It took me a year to get a diagnosis of Sjorgren's due to a positive SS-B marker. (I have since been told that I do not have Sjorgren's and the marker is now negative.)
Shortly after the diagnosis, my symptoms got worse. I had episodes when I would lose total body strength where I did not have the strength to lift an arm and in two instances, I didn't have the strength to open my eyes. I was bedridden on and off for months. When I was not having episodes, I was exhausted all the time.
Then new symptoms appeared:
- Constant dizziness
- weight loss
- weird patches on my skin
- hair loss
- memory loss
- loss of cognitive function
- hearing loss and tinnitus
- deterioration of vision
- unable to exercise or walk more than short distances
- peripheral neuropathy
- constant infections
- random allergic reactions (hives)
I was hospitalized last year due to syncope. They did tons of testing and nothing came of it. All tests came back normal.
Now I'm having new symptoms (in addition to everything else):
- An episode when I was unable to control my breathing for 20 minutes
- I go into heat exhaustion/stroke within 1-5 minutes of being outside in the heat. I am unable to leave my house during the summer.
- not sweating
- I can't regulate my body temp (can't cool down when I'm hot and can't warm up when I'm cold). I've overheated from taking a shower or drinking a cup of tea.
- Low body temp (96.2-97.6 unless I'm outside)
- I've been sick (viral) since February
- My blood pressure is all over the place. This morning it was 171/66 just sitting at home doing nothing. Normally it's in the low range - 95/65.
I have seen so many doctors that I can't count them all. No one can tell me why I'm in pain all the time, no one can tell me why I don't have any energy, no one can tell me why I faint when I go outside or any of the other things I'm experiencing.
My CMP and CBC counts are normal. Brain MRI is normal. Chest x-ray is normal. Cardiac tests are normal. Thyroid panel is normal. SSB and ANA are sometimes positive and sometimes negative. My inflammatory markers (CRP and Sed rate) are sometimes elevated and sometimes not. Leukocytes and protein are present in my urine on and off (without any UTI symptoms).
I have tried tons of things to get better with varying levels of success using western medicine, functional medicine, and eastern medicine, but nothing works long-term and the symptoms return.
I'm so frustrated not knowing what I'm dealing with. I don't want to be sick anymore. If I at least had a diagnosis then I could begin to figure out a treatment plan.