Monthly Archives: August 2008

Much like my old VW Bug

I saw the neurologist at Vanderbilt yesterday & am back to square one. My pulse and BP didn’t do the POTS freak out while there. Like when you take your car to the mechanic & that funny noise your car was making has disappeared. So no tilt table test for me. The Dr. said to go back to my regular Dr. and see if it happens there & have the Dr. order a tilt table test then.

Bummer. Because Vanderbilt has an entire autonomic dysfunction clinic. The neurologist said that the wait time to get in there is very long & was not interested in referring me. He said that Drs. who don’t know what is wrong with their patients often send them there & the clinic is swamped.

And no joy regarding my tailbone pain. No MRI ordered or anything. I think it is hyper-flexing & what can you do about that anyway I guess. I’ve never seen an ass cast LOL. The Dr. prescribed a pain med for me & I’m not liking it too much.

The Dr. said a lot of my muscles are spasming (but I knew that already ouch & zzz) & to keep going to PT.

The appt was kind of a waste of time really. The one Dr. had never heard of EDS or of an MRI where you sit down. I think some Drs. get defensive when you know more about it then they do. Maybe he was an Intern or whatever you call student Drs.

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An article about me and the Mr.

I mentioned Ehlers-Danlos Syndrome in this article about me and my husband that has appeared in our local paper. [link pops up new window]

I’m cramming for my neurology exam

yuk yuk. The appt is on Friday. Initially, it was set up months ago because of my muscle problems. My dad has Parkinson’s Plus Syndrome (doesn’t respond to meds) so my pain Dr. suggested I have a neurology exam just to rule out something like that. I’m the only one in my family who doesn’t shake. 🙂 My siblings & mom have a familial tremor of varying degrees.

Since I am now having POTS problems, I guess the neuro exam will help figure that out? Vanderbilt has an actual clinic for autonomic nervous system problems, so maybe I can get a refferal there.

POTS

Who thinks at all about the autonomic nervous system? Me, that’s who. Seems as if I have postural tachycardia syndrome, probably caused by the Ehlers Danlos syndrome. At the end of the month I’ll have more tests but at my regular PCP’s office my resting heart rate is around 70, which zooms to 125+ when I go vertical. This makes me very tired because it simulates running around all day.

Seems like I have a few options, until treatment is figured out:

1. Learn to fly HORIZONTALLY like Superman.
2. Lay in bed HORIZONTALLY like Mrs. Diego Rivera with a notebook suspended over me.
3. Become a head on a tray like in The Brain That Wouldn’t Die.

In better news, I am doing well in physical therapy.