Well, it’s been about a month since I’ve posted anything. I’ve wanted to post several times and just haven’t been able to find worthwhile things to share, or I didn’t like any of the ways to word things that have come to me, or maybe I just needed a break. Now that I’ve seen all my new doctors for the first time, I figure an update is in order.
I have an official diagnosis now from a Geneticist of Hypermobility Type EDS or Type III, though he did say there’s still a small chance it could be Vascular Type. His only reasoning is that my skin, while somewhat transparent, isn’t transparent “enough”, that my bruising isn’t quite bad enough on my shins (of course, my bruising just happened to be minimal on that day), and that typically people with VEDS have had some sort of vascular or organ rupture by now. I’m sure in his experience those parameters work quite well, and I definitely prefer a diagnosis of HEDS over VEDS. I don’t trust it, though. I want proof. I’ve read so many blogs, articles, support group posts, etc. and even watched videos shared by VEDSers who talk about the same kinds of things I do. The videos and pictures I’ve seen include skin and bruising that looks like mine, and there are others older than myself who had no known aneurysms or ruptures before they “accidentally” found it – women, for example, who had no idea until they needed a hysterectomy and discovered adhesions between abdominal organs during that surgery. The guy also didn’t read through any of the notes I provided upon arrival for my appointment (clearly, because he didn’t reference them once in our appointment and asked me all kinds of questions that were answered in those notes), and he was so hard of hearing that I repeated myself a lot. Further, he was a bit aggressive during the physical part of the examination, grabbing my arm and pulling it out of the gown without saying a word, moving my bra unnecessarily and without speaking, etc., which, as a survivor of various abuses, I found unsettling. I wasn’t groped, he didn’t exhibit any sort of sexualized intent that I could tell, and nothing was outright exposed. When I put all of that together, though, I find myself unable to trust him. He did say he’d run the VEDS test, however, so my to-do list includes asking him to send the request to insurance. If they’ll cover it, I’m getting the test. Just for confirmation. (I was instructed to contact insurance to see if they’d cover it, and they said to know for sure I need to have the doctor just send a request – if I’d known that, I would’ve just told him then and there to go ahead and send it.)
The Cardiologist was a bit of a disappointment. I forgot all my notes and personal BP monitor to show him, which immediately puts me on edge. I’ve had so many bad experiences where my suffering was ignored because I was written off as some sort of psych case that my notes have become a safety blanket. My memory is horrible, which is why it’s all written, and even when I don’t reference what’s written, just having it with me keeps me calm enough to remember more and speak more assertively. Without my notes, I get this weird performance anxiety where I feel like I’m going to fail at proving my honesty and my need for investigation, and I usually do wind up sounding anxious and scattered enough that I get dismissed. It’s even worse with male doctors, which is the majority, and that reasoning is two-fold: first, it’s a PTSD remnant for me to be uncomfortable around men (and authority figures), especially behind closed doors with no one else there as witness; and second, because of misogyny – I know from others’ anecdotes and from actual studies that women are not taken as seriously as men EVEN ON MEDICAL ISSUES! Men receive more credibility, more sympathy, more immediate care, and better treatment overall than women do for the same issues.(Here’s a good article on the topic.) He did check my BP and heart rate, explaining that yes, they do change significantly upon a change in position, but technically not enough for a POTS diagnosis. He ignored all my other POTS symptoms and said a Tilt Table Test wasn’t worth it because they’re unreliable anyway. So, I do clearly have some dysautonomic issues, but for now, the diagnosis is still neurocardiogenic syncope (which doesn’t account for everything). I did get a CT of my heart and aorta, showing no abnormalities other than the mitral valve regurgitation, and he described it as “mild”. Previously, it was “mild to moderate”, so either he has different standards, or being on blood thinners has made a difference. Either way, that part was good news, and it is good to know that I don’t have POTS, but it’s bittersweet because I still don’t have a sufficient explanation for everything.
I see the Neurologist for the second time tomorrow, and I’m sure he’ll have more input. My first visit with him took about four hours! Most of that time was spent with a nurse getting everything entered into their system (He’s independent so none of it was already there from other doctors as typically happens in a health network), and a bit of it was in the lab getting blood drawn and refusing to give them urine. His practice is also a pain management office, and standard procedure in most of those includes drug testing all new patients upon intake. I was not there for pain management and had to explain to them that the urine test was an unnecessary waste of time and money. Anyway, by the time I was ready to see the actual doctor, they were so busy that I was put into a workspace room where his NP was sitting at a laptop. He came in to sit with me for a couple rounds of about five minutes each, having to leave the room a couple times for different things. I was pleased with my experience overall. It was a hectic and frazzled environment, but there was order to it, and everyone who caught my attention seemed to know what they were doing and had a caring demeanor. This guy even includes spirituality in his healing practices, which is quite comforting to me because I can openly discuss my own spiritual healing without fear of ridicule or dismissal.
The Gastroenterologist appointment went well enough. It was short – I think we were only in the building maybe half an hour total – but he had some immediate suspicions and suggestions. He even revealed something my previous GI never told me: the polyp he removed from my colon in 2013 was precancerous. It was an adenoma, which itself is benign and harmless, but it’s the type which evolves into colon cancer. Not ALL of them advance to malignancy, but all cancerous polyps are adenomas. Even now at 35, I’m too young for that kind of thing, according to both the GI and the Geneticist, and there’s a note on the procedure paperwork that a colonoscopy should be repeated after three years to keep an eye on things – something else the last doctor never said to me. So, I had an abdominal CT done a couple days ago and am waiting to hear back on those results. The Geneticist wants me to consider seeing a different Geneticist who specializes in cancer to have her test me for colon cancer genes. I’m still debating on that, I think mostly because I’m expecting something to show up on the CT that will give us a more definitive and immediate path to follow. He suggested a Sitz Marker test to check motility, but it uses tiny bits of metal, and I’m not sure how safe it is for my body, meaning I’m worried I may not properly process out and detox the metal. Also, he has put me on digestive enzymes in hopes that the undigested food showing up in my stool is simply a matter of insufficient enzyme production. They’re helping some, but not a lot, and they’re doing very little for abdominal pain or motility. I can eat a little more in one sitting now than I could a month ago, but I still eat like a bird, and eating still often triggers heart fluttering, racing, and pounding, nausea, dizziness, BP trouble, and heat surges throughout my body. This is all dysautonomic stuff, so I’m hoping the Neurologist can pin down the root cause, but with the brain-gut connection, I won’t be surprised if it all turns out to be something sourced in my digestive processes.
My new Primary Care Physician (General Practitioner to some; “PCP”) is wonderful. It’s a woman, so misogyny isn’t a factor. She’s familiar with EDS and somewhat familiar with MTHFR, and she’s happy to listen and learn anything she can about both. Without any sort of skepticism or dismissal at any point, I received orders for spine x-rays since the most recent are at least three years old, a form to get a permanent disabled parking license plate, and an order for the exact physical therapy and therapist I wanted. We even chatted about how I’d found the info I had via support groups, and she plans to direct another patient of hers to the groups I mentioned. I’m expecting this girl to become a local expert on connective tissue disorders since now I know of not just the patients she mentioned already having but at least one EDS patient who just scheduled an appointment to get started with her. One thing about the EDS community is that we’re all so disheartened by medical ignorance (EDS isn’t even an available option to select in many medical computing systems!), once one of us finds a doctor who knows enough to be helpful, that doctor’s name and praises are made readily available for others in need of better care. This PCP will likely find herself with more EDSers as time goes by.
Last but definitely not least, I started physical therapy yesterday. I went back to the same girl I was working with after my hip surgery. She’s great. Love her to pieces. Totally someone I could hang out with, and she’s good at her job. She had never worked with EDS before, and it wasn’t in their computer system, either. However, between setting the appointment and my arrival, she had their people add it to the computer system, and she did research on EDS and effective therapies. She didn’t leave it to me to provide applicable information, which is spectacular because it removes some of my burden. Most of this first appointment was an assessment of my current state, but we did do a few exercises. Right off the bat, she noticed my pelvis was misaligned and fixed it for me. I was right about my sacroiliac joint being unstable, and now I know I have someone who can help me with it. I also could tell the difference in her approach to my exercises. Some of what she has me doing is a repeat of what we did before, but it’s all modified now to be less taxing. I’m sure I’ll get frustrated with how slow and gently I have to do these movements and how slow my progress will be, but that’s all part of me adjusting to my new normal. I cannot go full throttle anymore, and I can tell that she has picked up on that in me. We both have the same kind of spazz energy, and I know from before that she’s stellar at catching those sour notes and turning the mood in a different direction when negativity creeps in.
So, overall, I’m in a good place right now. I don’t have all my answers, but I know that we’re much closer to finding them. I know that I finally have a team of people I can trust to believe what I tell them and put in the work to help me toward a better quality of life. I have hope again. Not that it was ever totally lost, but it’s been running quite thin over the last few years as my condition kept deteriorating so quickly while being written off by so many doctors. I know I’ll always run into medical professionals who’ve never heard of my condition, but at least now I have not just a confirmed diagnosis but doctors who know how to treat it. I see light and hear noises coming from the end of the tunnel, and while I can’t run toward it like I want to, I have confirmation that it is indeed there.