It got so bad that I had my hubby take me to the emergency department.
The neurologists, doctors, and nursing staff thought I was an interesting case.
One of the nurses said I was scary... That I'm 22, otherwise healthy, and I presented with such a debilitating case, which came on so suddenly.
What caused the truncal ataxia? The medication I was on to relieve the upper chest/shoulder spasms. Apparently I am extremely sensitive to dopamine... The main ingredient in the medication.
So, I've been admitted to the hospital, and they've run numerous blood tests, and looked at my MRI results from before.
There was apparently an anomaly on the MRI, and I'm waiting to speak to the neurologist to ask what it is. Apparently it's in the wrong place to be causing any type of movement disorder.
The neurologist, after weaning me somewhat off the medication, and finding that I am almost miraculously cured, jokingly said that he should put me back on the meds and videotape me, because I had a "perfect presentation of truncal ataxia, and it would be beneficial to have video of it."
Once again I was the object of much showing off. I had, I believe, 2 neurologists, 3 med students, 2 MD's, and numerous nurses looking at me, checking my reflexes, asking me questions, and watching with astonishment as I jerkily; haltingly took a few unsteady steps. They also had me put my arms in front of me like a zombie, and close my eyes... Only to catch me a half a second later, as it became obvious that I had NO BALANCE WHATSOEVER WITH MY EYES CLOSED.
So far, since having my dose cut in half, the upper chest/shoulder spasms have not come back, and the neurologist would like to see them before I am discharged. I seem to be at a happy medium right now, except for some continuing instability and balance issues.
So I still have no diagnosis for my original problem, but the worst seems to be over, and that's a start.
Remembering Michael Lennick
1 week ago
6 comments:
Oh, I am so relieved to hear that things are getting better, not worse!!! This part of your journey has been so scary to read about, never mind living it!
You are in my thoughts and heart always.
~e
Forward steps are always good, even if you're stuck in hospital taking them.
xx
Goodness! Well, I'm glad to hear you are at least getting some relief! Hope you get some answers soon. And hope you continue to feel better!
Thanks for your comments!
I am now out of the hospital, and I had a day that I wasn't twisty or twitchy.
I spent time with my family for the holidays.
It was a day well spent, but it was just the one... I'm back to twitchy now.
They'll be calling me with an appointment at the movement disorder clinic. Until then, I still don't have any answers.
I am really behind on blogging and commenting, the world has overtaken me a little I am afraid.
Poor proprioception just sucks really with EDS. There is a straight white line on the physio department floor which is used to help patients with varying conditions. With our eyes open my daughter and I sort of manage to walk along it. She with her eyes shut and imagining the white line, walked out of the door at an angle that was alarming, she was convinced she was walking in a straight line. Me, with eyes shut just fell straight over! Poor proprioception is a hidden disabling part of EDS that is much misunderstood. There is more understanding of it now than a few years ago, benefitscroungingscum blogged about the reasons behind it recently.
I hope that finally with enough Professionals taking notice you will get some respite from all this in time. Remember to be kind to yourself, little treats to keep your spirits up whilst all those people try to help. I know exactly what it is like to have numerous medics pop into the room to 'have a look' and really empathise.
Some of your jerkiness sounds like myoclonus/myoclonic jerks and I wonder whether an ambulatory EEG if that is correct (the one where they attach all the bits and bobs to your head) and then you wear it for a few days. This can pick up neurological conditions (that may be entirely separate to the EDS) which cannot be picked up via MRI/Scans or the eeg's which take just a few minutes. (Just a thought).
Pleased you are out of hospital but you must be feeling somewhat bemused by all that has happened.
It seems the EDS community around the world is here for you. its really helped me and hope it helps you emotionally even if you feel like you are getting nowhere fast.
Take care and please accept a virtual hug all the way from the UK.
Achelois,
I've had poor proprioception for most of my life. It's really quite bad, and I usually need to see to balance. I can do it with my eyes closed as long as my feet are flat on an even surface-preferably without shoes on. I can feel the difference in pressure, and adjust accordingly. When I was twisting, it was also making me stand on my toes more (while my feet were pointed slightly to the right), and I couldn't keep my feet flat on the floor, and I'm assuming that played a large part in the no balance issue.
My dad, and my cousin on my mom's side had epilepsy, so I've definitely considered some type of seizure to explain the movement issues.
I can't seem to get a doctor to pay attention to me though.
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