Monday, March 29, 2010

New Symptom

On top of the shaky/twitchy/spastic tremor-type-things... I am now getting some spine-twisting-shaky motion, and randomly walking/standing on my toes. My feet also twist to point in and out, instead of straight like usual.

What it's looking more and more like is Ataxia. Which type, I don't know, there are 3 types and all are associated with MS.

I'm afraid.

I just want some answers.

Friday, March 26, 2010

What's Next?

I fell between 15 and 20 times yesterday. (and 4 times today already, several the day before yesterday, a few on Tuesday, and twice last Friday)


Because my hips and knees are SOOOO loose that the twitch/spasm/tremors are causing me to lose my balance and dislocate them.

I'll be standing, when I'm suddenly attacked by LOTS OF SHAKING (like it's my own personal earthquake) and BAM! there goes my knee(s) and/or hip(s).

I fall quite gracefully.

Really... I fell so many times, and it mostly went completely unnoticed. I am a master of landing.

The upside? I now have some sort of connection for my bad days with twitching. They correlate completely with my awful days for joint laxity; which in turn seem to be affected by my hormones, which is absolutely fun! I get to bleed, be crampy, bloaty, cranky, irritable, SORE, dislocatey and twitchy at EXACTLY THE SAME TIME.

I also found out yesterday that my cousin has a brain tumour, and she went for a biopsy yesterday to check if it's cancerous or not. It's in an inoperable part of her brain. So lots of anxiety and waiting there, too.

In times like these, I really just want to curl up and watch a 'fluffy' movie. One with a nice, pleasant story, and a lovely happy ending. With kittens, or something. Whilst eating a bowl of chocolate ice cream...

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?

Monday, March 15, 2010


Finally, after days of "I'm sorry, the person you need to speak to is unavailable," I've been given an appointment date for a neurologist.

On the second of November, 2010.

I was triaged as "high priority" and this is the soonest appointment they could give me.

When I spoke to her (the appointment co-ordinator), the only thing she could recommend to get in any sooner, would be to go out of city. I've told her that was fine, and she's looking into it.

I'm currently on medication which is costing me over $100.00 per month (closer to $150.00 with the dose I'm up to), which was prescribed to treat my symptoms. I would like to know what the heck is wrong with me before I spend the over $1300.00 on medication which may or may not be necessary. And what if it's something serious? What if I could really benefit from being diagnosed early?

I'm so tired of "What ifs."

Is the medication helping? Yes. Is it a good idea to be on these meds if there's a problem that can be fixed instead of just treated? No. Especially not if I'm ever going to have children. Which is looking less and less likely. Dammit.

Wednesday, March 3, 2010

Sex Toys & Bendy People!!!

Odd title, but you have been warned.

Last night, I went to my not-so-local adult store to purchase a new vibrator. As I've recently moved, and my husband packed all of our bedroom toys, I have no idea where mine is, and it's in need of replacing anyway.

When I got to the till with my purchases, the small-talk began with the wonderfully hilarious man behind the counter. We talked for a good five minutes, and eventually (I can't remember why) I told him "Last night I dislocated my hip, my knee, my ankle, my shoulder, and my jaw."

He looks at me kinda funny, then "You were playing a sport of some kind, right? Please tell me that wasn't from sex."

"That was from sex" I told him, with a blush in my cheeks.

He looks at me funnier still, tells me my total, and turns around to rummage in a cabinet as the debit machine is doing its thing.

He hands me a card that says '$10.00 off your next purchase', and tells me, "It only takes 3 dislocations to get a discount out of me," awkward pause... "play safe."

I left the store in near hysterics, with a grin on my face.

If any of you have similar-type stories, and aren't shy to admit it, it may be a great way to get a discount from an adult store, even though you know they'll be picturing the kinds of positions necessary for dislocations to take place.

Have a nice day, and a safe night!

Tuesday, March 2, 2010

Test Results

I phoned my geneticist yesterday, to ask for the blood test results and the MRI results that he had ordered.

Everything was normal.


That means no Celiac, no Chiari, as well as no all-the-other-stuff-I've-already-gotten-results-for from the other doctor.

I asked if the MRI had been done on my whole brain and C-spine, as opposed to just the areas concerning Chiari, and it had. There were no incidental findings; it looks like my hubby can stop worrying about me having a brain tumor.

As soon as I find out which neurologist I will be seeing, I'm to call my geneticist so he can forward the MRI results. This should hopefully speed up the process.

Moving went pretty well, all things considered. I only had one major dislocation event, and it was immediately after the last box was moved into the new place (after everything was cleaned too). I was opening a celebratory black cherry cider, and my hip gave out. I hit the floor gracefully. You believe me right?

Incidental moving-related-ish injuries: 5 bruises on my left knee, one on my left forearm, one on my right shoulder; cracking skin on my knuckles from cleaning (didn't wear rubber gloves 'cuz I'm S-M-R-T), and last but not least, one dog bite to my left calf.

I've thrown away a lot of useless, sentimental items which belonged to my dad. It would have been his birthday on Friday. I was throwing away his stuff on his birthday. I shed some tears.

P.S. I'm now taking the maximum dose of the Parkinson's pills that my doctor will allow, and I'm still experiencing the twitching, spasming, and tremors.