My appointment yesterday went kind of as expected. Not bad, just more waiting and more tests. *having a hard time concentrating: “don’t spit (N1’s new thing), don’t hit, don’t throw (N2’s new thing), don’t push, get out of his face”* Everything I had to say – poof.
Appointment: Re-referred to GI, abdominal ultrasound ordered, blood work, and more medication prescribed that I probably won’t take. I’m a rebel patient. But it’s for acid reflux and I WISH that’s what this was… New doc is nice, wants to be thorough, but doesn’t know much about autonomic dysfunction. But I have to give him some kudos, seeing as he agreed to be my doctor.
When my original primary got scared away (“moved closer to family”), I had to find a new doctor. Obviously. I was really excited that a doctor my insurance covered, with 40 years of experience in internal medicine (and AWESOME reviews), was taking new patients. I eagerly tried to make an appointment. That pesky hopeful feeling was creeping back in. After reviewing my chart, the nurse said he had refused to take me. Um, EMBARASSING. I tried the other docs at his practice… All refused. Why would they refuse to take a patient you ask? Patients with Dysautonomia have very widespread symptoms because of how much the ANS controls in your body. We often come across as hypochondriacs because of the seemingly unrelated, large list of complaints we seek help for. No doctor wants a hypochondriac on their hands. Despite knowing that I really do have something physically wrong with my nervous system, I even wonder at times if this is all in my head?
This is a pretty good list of symptoms that someone with Dysautonomia may experience. I attempted to put a red dot next to those that apply to me. I’m the least tech savvy person you’ll meet, so I used a kid’s paint app on my phone – no shame (actually a lot). That’s why it looks like my 3 year old made the dots. Except he probably would have done a better job. Please look at those red dots and try to keep a straight face… You can’t.
I also have weight loss, unequal pupils (WE KNOW!), blood pooling, electrolyte imbalance, loss of sensation to touch/pressure, numbness and pain in extremities… And stuff.
A link on dysautonomia… and another link.
The children beckon.