My recent visit to the rheumatologist was aggravating and disappointing. My hope for the appointment was to get find out why I'm having some type of tachycardia and what to do about it, and in general manage my HMS better as I'm almost completely dependent on others at the moment.
At the beginning of the appointment, she said she needed to practice medicine, i.e. not prescribe medicine willy-nilly.
I told her I was diagnosed with BJHMS by one of her colleagues, but she went through it all again. I hyper-extended more than I had in the previous diagnosis and while my ankles weren't hypermobile when you bring your toes to your shin; I showed her I could clap my feet. Her response: Well, I can do that so it can't be hypermobile.
The final diagnosis - I have BJHMS because I don't have Marfans.
I told her that my pulse rate is normally around 65-70 bpm, but lately its spiking at 113, and hovering at 85. The rheumy told me I should probably get that checked out. And adjust my medication dosages. But she wasn't going to do that as she wouldn't be following up with my case. And she wouldn't put any referrals in the system, as that wouldn't 'be practicing good medicine". Riight. Tell me I need tests and/or treatment on my heart (a very important organ in my opinion) and then not order them or send me to a cardiologist. Of course, THAT
is practicing good medicine.
I also told her that I'd been having more troubles every day with my HMS, and it was debilitating. (Hint: Debilitating = Causing a loss of strength or energy). She said "don't worry, it's not debilitating - lots of people are fine and you won't turn into a vegetable or anything." She next patted me on the shoulder and said..."It'll be okay."
At the end of the appointment she told me to follow up with some other doctor for pretty much everything we discussed; but I could call her if I needed anything.
Oops! That went a bit longer and a bit more of a rant than I intended. Thanks for reading and the support on these boards.
I have woven a parachute out of everything broken. ~William Stafford
EDS, POTS, carpal tunnel, dysphagia, GERD, Autonomic Dysfunction, migraines, food/other allergies, herniated & bulging discs (don't know why)....and I'm SHRINKING