Just a few things to keep you updated
Turns out, what I was convinced was POTS is in fact Neurocardiogenic Syncope. I had that diagnosis already, but with all my symptoms together, I felt like my doctors weren’t hearing everything and thus not giving me an accurate diagnosis. Thankfully, my new primary care doctor is wonderful, and she ordered the Tilt Table Test after my new (now fired) cardiologist basically wrote me off as crazy. Of course, that particular day was a good day, and I had no episode during the procedure. And, even though my blood pressure does drop and my heart rate does jump when I stand, both measurements are not technically in the POTS range. What that means is all my problems originate neurologically, either from the syrinx or from what I strongly believe to be an acquired Chiari Malformation.
Basically, my spine’s instability leads to my spinal cord being yanked on and pulling my brain down into my spine and out of my skull.
Here’s a list of Chiari symptoms I got from an EDS support group with my symptoms marked. I’ll be taking this and a study detailing why a person with EDS who also has Chiari symptoms needs upright MRIs. It shows that people with hereditary connective tissue disorders can have “normal” brain MRIs because the laxity in soft tissue allows for drooping, stretching, and mobility of the brain and brain stem with a change in position and a return to normal position when lying down.
This isn’t even all the problems I have, but I think it paints a pretty clear need for better testing and more attention than I’ve been given. I’ve fired all the newer doctors except my PCP and the Physiatrist who diagnosed me. Oh, and my gynocologist I still see, but she’s not new. I saw her recently, too, to discuss my abdominal pain and disappearing periods. I went in thinking it was endometriosis, but she was more convinced I was actually in early menopause. Usually, with endometriosis, periods are heavy, irregular, and dominated by severe menstrual cramping. I actually am just barely having periods at all, but since my new gastroenterologist said he saw nothing in my abdominal CT (and then ignored me – I’ve left two messages and still have no response over a month later), and I seem to have pretty bad flareups spanning the week before my period starts through my entire mini-bleed, I thought maybe some of my problems had a hormonal or reproductive basis. Nope. Hormones and pelvic exam were all normal except a bit of interference, spatially, from my intestines.
So, assuming I’m well enough to drive tomorrow, I’ll be taking all my notes and the above stuff and asking her to order upright MRIs and write referrals to several new specialists: an electrophysiologist, a hip specialist, a rheumatologist, and a spine specialist – all recommended by an EDS support group I’m in online. Boy am I grateful for groups on facebook. I’ve learned so much from them, and now I feel better armed to fend off arrogant assholes who don’t care enough to listen or take me seriously. I was even able to share screenshots of old brain scans in a Chiari group, and I was told that there is in fact a small Chiari malformation in my scans, as well as Degenerative Disc Disease, which no one has said anything to me about.
Everyday life has me mostly bedridden these days, especially since the most recent spinal subluxation a couple weeks ago. I emailed my neurologist about that episode since I’m not talking well enough for a phone call, and he ignored it. So, he’s fucking fired. Like, he’s probably gonna get a shitty letter from me fired. In fact, if I’m right, and this turns out to be Chiari, I’ll be sending letters to several doctors, detailing the failures they offered me and encouraging them to better educate themselves not just on the relevant conditions, but on bedside manner, listening skills, and patient respect. It is a horrid truth that the majority of people with medical issues like mine are dismissed by doctor after doctor after doctor, many turning to suicide as a result. I’ll be including that in my letters.