Hi Shonda!
The flights were okay. I had a bit of the typical ear pressure but nothing too bad. I haven’t been on a plane in years so I wasn’t sure how it would go. Oddly enough, I had a lot of trouble with elevators. I could feel them coming. I would get a weird pressure/pulling sensation inside of me & felt really woozy. Simply from the elevator arriving at the floor I was on. Sometimes the woozy feeling was stronger outside the elevator than it was inside. Very odd.
Snuggly kitties are the best. I love ’em.
My appointment. My oh my, that appointment. It started out well enough but I have been very frustrated ever since. He was polite & seemed interested in my symptoms. He asked a lot of questions & I had a lot of the symptoms he mentioned. I felt good about all of it in the beginning but I started to feel uneasy as the appointment went on. By the end, I was not happy at all. Even though I have so many symptoms, he said he is not seeing an autonomic problem. Okay, maybe I don’t have something typical or obvious and maybe not typical POTS or something but there is absolutely something wrong. I was expecting the neurological part of the exam to be normal & it was. He said I responded almost “above normal for someone so deconditioned & dealing with all that I am.” I did the walking up & down the hallway thing. I was having a good day & was able to do more than I can on my off days. I was still shaky & wobbly and, after a brief jog that I was AMAZED I could do, I was very weak & my tremor was dramatically worse. Apparently none of that meant anything to the doctor though.
I even showed the guy a picture of my foot when it turns purple-grey. I had my hand in the photo as a baseline to be compared to & it is so obvious. The nurse was great. She was very caring & took great interest in my symptoms & was shocked that my foot looked so bad in the photo. The doctor, however, glanced at it & said “Huh, yeah look at that.” I showed him my MRIs (I have to get another copy of the disc because he didn’t give it back) & he spent less than 5 seconds looking at it & said it was “normal.” Although I have symptoms that fit hydrocephalus, cranial instability, and all of that stuff & even Barb from this forum noticed those things when she was kind enough to look at the MRIs for me.
I said that I have exercise intolerance, heat/cold intolerance, that my heart rate goes very high with little activity, etc. & his answer was that I need to start an intense exercise regimen that would have me running on treadmills in a month & keeping me at my max cardio heart rate for at least half an hour every day of the week. Um…did he pay attention to the intolerance stuff & the fact that I have terrible joint pain? Doing that kind of exercise isn’t really an option for me.
He did not believe that I have any autonomic or neurological issues but was willing to put me through another Tilt Table & some other type of autonomic testing. I’m uncertain if I even want to do that now because in the summary paperwork he gave me at the end of the appointment he listed his main impressions. What was his most likely diagnosis for me? Somatic Hypervigilance. Meaning I am doing it to myself. That it is anxiety & that I am just being a hypochondriac. One thing I can try to cling to is that he did mention EDS in the paperwork. He said I had “joint laxity & hyperextensibility consistent with Ehlers-Danlos Syndrome.” So I have that on paper now but it is unfortunately buried in the paragraphs & not at all listed in his concerns/diagnoses.
He gave me propranolol which is going well so far. I have noticed that my tremor is less. I have actually gotten some sleep which is helpful as well.
I was so frustrated after dealing with all of that. Especially since it takes driving over 6 hours total & dealing with so much pain in order just to meet with that doctor. I went from extremely angry to very sad & worn out, crying, back to angry, & so on. It’s one thing for a diagnosis to take time & be a long process of tiny steps. What gets me is when I feel like something is so obvious & yet I am treated like I am insane & making it all up. I know the doctor doesn’t know me at all so he has no idea that I do not try to get attention, I don’t talk myself into a tizzy, I don’t over-react or play things up or anything of the sort. My entire life, I have always been blown off & treated like the exact opposite of the type of person I really am. If I ask for help, it is because I have exhausted all other avenues not because I want attention. If I bring in a list of symptoms to the doctor, I am expecting them to use their professional skill to help decide what is important & not use it as “proof” that I am “looking for a problem.” That’s their job, isn’t it? Don’t they always say “Tell your doctor everything because you don’t know what may be important & it could be info that will point them in the right direction”? I didn’t even list everything & I don’t list every little everyday thing but the things that are obviously symptoms.
And he obviously must not have a proper understanding of EDS to dismissively refer to “party tricks,” acknowledge that I have it, then not take that into account in my diagnosis. There seemed to be a strong disconnect. To give him the benefit of the doubt, he seemed like maybe he can’t process more than one thing at a time so maybe he was just too confused. I will not trust him to lead the way but maybe he might follow guidance from another doctor who tells him exactly what to do. I don’t know. I’m not exactly jumping at the chance to continue dealing with him.
My husband says he doesn’t want to deal with these doctors anymore & only wants to look at the top-of-the-top specialists. He wants to try to get me in with Dr. Tinkle. I see a geneticist in Nov. who I have read about in the Inspire forums & a few people have experience with her, said she diagnoses EDS, is good, etc. Fingers crossed!! The journey continues.