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Something Odd I Noticed, Thought I'd Ask --- Walking With (like?) Dinosaurs


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So today I finally get the energy to get myself in the shower (I stood up the whole shower, and didn't use the chair -- I know it's probably safer and buys me more good time to use the seat, but I hate it. I feel like I'm 120). As I walk out of the bathroom, my husband says, "You always walk around with your big toes turned up... like a velociraptor!"

And I do, actually. I never thought about it. I think, unless I have shoes on, it's actually hard not to... Like, I have to make a conscious effort. (I don't know as I do it with shoes on, probably not so much because they're somewhat confining).

I know that hypermobility/Ehlers Danlos is associated sometimes with dysautonomias -- and the doctors have kind of determined (long ago) I don't have enough of the clinical diagnostic criteria to technically meet any of the EDS classifications (I have joint hypermobility, mostly hands, knees, and hips, not elbows so much, and my skin isn't quite as stretchy/I don't bruise so effusively (but easily). No doctor will deny I bend too much (I had a physical therapist once who was awesome... she got to the point that when she was measuring stretching/range of motion, she'd say, "I'm not going to ask you to tell me when it hurts, I'm just going to stop stretching you out when it ought to.")

So my big toes point up -- way up, because they bend so well. I can't see how my doing that would be in any way related to whatever dysautonomia it is I end up having per se, but whereas I have other muscle oddities (and I know some others do too) I thought I'd ask if anyone does sort of similar things, or if it relates to anything at all... I almost wonder if it's something akin to how some people subconsciously hold their breath at random points during the day during a stressful event, or certain physical states/activities.

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Shoe,

I just wrote you a long email, and the site ate it. In essence, I have a problem similar to yours with movement on my left side, toes, fingers, jerky movements, weakness. My neuro at Mayo said he was sure it was from a TIA, since I've been scanned and found to have an abnormal number of ischemic lesions, with at least one small stroke. You may want to seek another opinion, just to be sure.

Please let us know what you find out, and how you are :)

Cheers,

Jana

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Now that's interesting. They thought I'd had one (a TIA) a while back (so an MRA was ordered) and I was told "it's basically normal." I asked what the difference between basically normal and normal normal was, and I was assured it was an artifact. (I've had soooo many flukes and artifacts on tests -- I imagine most of them HAVE to have been, because later tests will look okay, or I'd be dead or something, but it's unnerving). I sort of trust that the doc who said it was an artifact wouldn't have glossed over it if she hadn't honest to god had a real good reason to believe it was, but man... They did the MRA and the TEE before starting me on Ritalin (cause I was so wiped out) to specifically check for a PFO (which I had, but somehow wasn't told about till 3 years later) so there is a nagging doubt.

I think what's going to boil down to is I've got some sort of dysautonomia, but it'll be an adventure (heh) figuring out which it is, and probably even moreso, if there's a reason why (that is visible or measurable by the current state of medicine). It is really curious, though... The PT people (and the new GP) have noted that my left side seems weaker when it comes to things like resisting pulling and pushing -- but it's the right side of my face that droops (and my cheek and sensation are off on that side) and my right leg tends to lead with the calf pain, sensation problems, and the like. (Both legs do get the pain, though.)

Noticing now at rest, my toes aren't in the upright position. As soon as I try any weight or tension on them, they go up. If I walk, I can keep them down, but I have to think about it and as soon as I stop thinking, I notice they flip up.

My brain MRI (in March) was pretty clean, as was my thoracic (but I guess those aren't always easy to catch oddness on), and the neuromuscular doctor didn't think the cervical spine was worth the MRI. I'm thinking now that it probably is... One thing I'm very thankful for, I have this tendency to fall right to sleep with motor noise -- I zonk right out in the MRIs. The tech will say, "All right, we're done!" And I'm like... "Mmppphhh... Five more minutes, mom? Do I hafta go to school?" It's the little things. :)

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Love that sense of humor amongst everything going on! Isn't it what really saves us in the end?

Without a doubt... sometimes it's really hard to find the lighter side of it all, but it's just plain deadly not to. My EMG/SFEMG was done by an attending neurologist and an underling (a minion?)... When it was over the attending said, "You can put your clothes back on if you'd like" (and left the gigantic piece of equipment right in front of the gurney that's elevated about five feet off the ground. I couldn't get down, never mind get to my clothes). I said to her, "No, I was thinking of wearing the jonny home, it's stylish." I thought the fellow neuro was going to wet his pants. Neither moved the machine. Ahem.

It is so hard some days, but it's the only way through, and I'm so gonna get through this in whatever way possible.

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