It’s been over a year since my five ER visits and week-stay at the hospital. I am ready to be proactive again in regards to my health, even as I have lingering post-traumatic stress from the care I received while in hospital, e.g., not believing I was sick, accusing me of creating my symptoms, referring me to psychiatric care, insisting it was Fibromyalgia, refusing to do tests, refusing to keep my hospitalized for care, etc.
Turns out, after a two-hour tilt-table test at the University of Washington Hospital and conclusive evidence read by a specialist that indeed I do have a ‘real’ condition. A condition closely related to POTS Syndrome. The key for me is to keep up my potassium and sodium levels, stay hydrated, and not over-do it. I drink lots of coconut water and take pink Himalayan salt and a variety of supplements. I was also diagnosed with joint hyper-mobility syndrome (possibly EDS) which is a probable cause of my POTS-like Syndrome.
My symptoms prior to going to the ER last year were weight loss, hair loss, loss of appetite, neuropathy of all limbs, autonomic dysfunction (including digestive pain, not being able to sleep or sit up, heart rate of 160 standing/120 sitting), chest pain, mid-back pain, all over fatigue, weakness, shaking, and generalized pain. I’d spent a good month in bed before the symptoms worsened. Also, I had signs of dehydration—white tongue, etc.
It still amazes me the doctors thought I could control my heart rate, and literally make it go from 90 resting to 160 standing and back down to 90 resting. They must have thought I had super powers. Or they just didn’t want to face facts that I might have a RARE condition!
Anyhow, because of the stress of being in and out of hospitals and seeing multiple specialists, I never wanted to see a doctor again in my life. I have since, but not because I wanted to go.
However I am ready now to get some blood work done, after briefly reading about the MTHFR Gene. (Thanks to a reader for telling me about it.) I have been trying remedies for years to rid myself of depression, fatigue, pain, and the like, particularly related to PMDD. This gene could be another piece of the puzzle. And if so, folate treatment could be the answer. I have listed a few links, the first ones that I found that helped me to understand the gene’s role in our bodies.
PMDD, POTS, and EDS (Ehlers Danlos Syndrome) are common with people on the spectrum. I thought this gene was worth mentioning, as well.
I started going back into my far infrared sauna today, too.
Another reader said MTHFR looks like MOTHER F***ER… which made me giggle.
Okay, here are the links. Step-by-step we are finding answers.
If direct links aren’t working, copy and paste.
http://mthfr.net/mthfr-resources/
http://www.doctorbecky.net/mthfr.shtml
Much Love,
Sam
Everyday Asperger's 