Thursday, March 18, 2010

Google is P*SSING ME OFF! In a good-ish way?

So I'm trying to find information linking EDS to the spasms/twitching/tremors that I'm experiencing.

I type "ehlers danlos syndrome twitching" and the first result that pops up is... ME... MY BLOG... This one... As nice as that is, it doesn't bloody well help me. I'm apparently the best source of information on it according to google, but I'm entirely useless to myself.

So I tried "ehlers danlos syndrome tremors" and the first result is not even close to what I'm looking for, it's talking about them in an unrelated way, and the second response is again, me.

Third time's the charm? Let's try: "ehlers danlos syndrome spasms" the first result for that one is a blog by a lady that suffered leg spasms- not entirely helpful- not what I'm dealing with. The second result is entirely unhelpful information for massage therapists. The third result is me- again.

I'm entirely frustrated at this point.

I have however found that what I'm dealing with appears to be tremors. Possible types of tremors include: dystonic tremors, cerebellar (intention) tremors, or psychogenic tremors.

Again... entirely unhelpful, at least without a diagnosis.

At this point the most likely diagnosis based on the information I can find would be MS.

This is not a comforting thought.

On a lighter note, I have been baking... I made banana bread muffins, macaroons and brownies on the weekend. I made more banana bread muffins last night, and a really good beef stew. And I've been crocheting cute little dresses which should hopefully fit my youngest niece by summer.

It makes me feel like a grandma. I'm not even a mom.

Edit: Since posting this, I am the first result on all three of the things I typed into google. Aren't I the smart one?


Veronica said...

I had the same problem when I was trying to find a rheum interested in EDS in Tassie.

Every search result, if I wasn't the first result, I was the second or third. Unhelpful much?

elise said...

Have you had an MRI or other imaging done? I can't recall.

The best way I've heard intention tremor described is if your hand at rest has no tremor but when you reach for a cup, your hand shakes badly. It's the movement with intention to do something that sets off the tremor or the tremor is noticeable.

I'm thinking of you.

(Mmmm, can I have some brownies and muffins?)

BubbleGirl said...

Thanks (as always) for the comments ladies!

The tremors I experience seem like intention tremors, but not quite...

They also appear to be like posture tremors.

They rarely happen if I am at rest, especially if I'm leaning back. They happen most when I'm doing something with my hands; as in both of them. If I'm only using one hand they seem to be less severe and frequent than if I'm using both hands. I also find it helps to do things without looking.

They are similar to psychogenic tremors due to the sudden onset, and the fact that they get worse when I'm under stress, and get better if I distract myself.

The great thing about the distractions is the part where the ones I use for pain also help the tremors.

Kerrilynn said...

I have this issue... It can be a lot of different things as Google has shown. The most likely cause, though, for EDSers can be attributed to muscle fatigue, dysautonomia type stuff, intentional tremors due to muscle fatigue, etc. I get horrible tremors/shakes in my legs that resemble convulsions, it's from my body trying to over-compensate for the fatigue by sending out a surge of adrenaline.

I hope you are able to find some answers. Talk to your dr's. *hugs*

Flexability is over rated, creativity is ingenious said...

I get involuntary movement in my legs and feet if my body doesn't get enough rest,I'm low on magnesium, or if my ankle braces are on for too long. It took a while to figure out, and MS was suggested to me as well. Hahaha that's the last thing we would need to deal with.

Keep your chin up!!

BubbleGirl said...

Thanks for the comments and ideas.

I can't seem to find any relation to my bad days for spasms/twitching/tremors, and anything else that's going on.

I tried no caffeine, and that didn't help, I've tried lots of sleep, less sleep, regular sleep, healthy eating, more sugar, less sugar... nothing seems to do anything... Weird thing yesterday; I couldn't stop shaking, with some violent twitches, until I started to crochet, but if I took too long of a pause to read instructions it started up again until I went back to crocheting. It felt so good to sit still that I stayed up way past my bed time... like I did tonight again for the same reason.

BubbleGirl said...

Elise... Keep forgetting to answer you... I had a non-contrast MRI done on my brain and c-spine. It didn't show Chiari, which was what they were looking for, and they apparently didn't see any "incidental findings" but when you're looking for MS specifically, they send you for a contrast MRI... So I really don't know much at this point.

I'm pulling all the strings I have to get seen sooner... I might even go to the newspapers, because I'm finding it harder and harder to get through a day.

Thank you all for your concern.
Gentle hugs for each of you!