Neurologist

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.

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!

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.

YAY!

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.

Relief and Frustration

I saw my GP yesterday to discuss my blood test results. According to him: "By the looks of this blood work, you're healthy." As I'm sitting there *twitch* looking at him *twitch* and wondering what else is new... *twitch.*

The only thing on my blood work that was not in the "normal" range was my platelet levels; they were slightly below normal. My iron is fine, my kidneys are fine, my liver is fine, my thyroid is fine...

Apparently, I'm FINE!!! Isn't that just wonderful???

*TWITCH*

*SPASM*

"So, doc? *TWITCH* What's *TWITCH* wrong with me?" As I'm ever so carefully trying to relocate my shoulder.

"I have no idea," he replies, "I'll send you to a neurologist; the receptionist will call you with your appointment time."

Lovely... More waiting, more tests, more doctors...

Oh, and I'm moving this week. I'm completely useless, as I forgot to take 2 of my pills on Sunday, and I have been as bad as I was before the pills since then. It's really hard to do anything at all. I was going to wash the dishes last night, so they could be packed, but I could barely even wipe down the counter. I really don't want to be throwing plates around the house, as I'm attempting to pack and clean.

I was talking to my husband last night, and he asked what my plans were. I told him "I *twitch* was planning *twitch* to *twitch Twitch TWITCH SPASM!!!!* wash the *twitch* dishes." At this point I had tears in my eyes, partly from the pain, and partly from the frustration. He looked at me, standing there, and gave me a hug. I almost started crying. I don't want to be pitied, especially by my own husband.

I'm so frustrated, I want to run, scream, and hit things. I want to find someone to blame, and kick them in the shins. Then step on their toes. With high heels on.

When I have my twitchy spasms while I'm speaking, they force the air out of my lungs to make it sound like I have a stutter. So that's fun too.

I'm still waiting to hear from my geneticist about the blood work he sent me for, as well as the brain scan results. Maybe I should give his office a call to see what's going on...

P.S. The doctor seemed quite confident that my twitching/spasms/tremors are hereditary/genetic, but that they have absolutely nothing to do with EDS.

Related?

I'm not sure if either of my new un-problems are related to the medication I'm on.

First, I've been without my ankle brace for three days now, and it only hurts if it bends past "normal" range of motion, or if I go too long without moving it.

Second, I've been feeling more stable, except for my left shoulder, and that's because I'm still twitch-spasming it out of place frequently.

I'm still tired ALL THE TIME.

My memory is mashed potatoes and swiss cheese. Mashed potatoes because everything seems jumbled together, and swiss cheese because there seem to be holes in my memory, and things seem to get stuck (like songs that play over and over, and OVER until you want to find the singer and kick him in the shins).

On another note, my walk-in doctor has had my blood test results for over a week, and he didn't think it was prudent to call me. So I called him, and set up an appointment next Tuesday to discuss the results. I think I want to kick him in the shins too.

Oh, and GO CANADA!!! We don't seem to be sucking at the Olympics! Yay us!

Waiting

I'm still waiting for the results of my 2 sets of blood tests, and my MRI.

I did have to go back to the GP for a refill of the Parkinson's pills. At that time he also told me to increase my dose from 3 pills a day to 4 pills a day. My spasms are coming back, even with the increased dose. I can't imagine what I would be like without the medication.

I am tired all the time now, like I could easily lay down and sleep at any time of day, regardless of how much sleep I've had the night before.

I can't seem to keep my thoughts straight.

My muscles feel stiff and fatigued... More fun side-effects.

And I now have a fluttery feeling twitch in my right eye.

I would really like to know what's wrong with me, so I can start treating the disease, not the symptoms.

Doctor, doctor, give me the news...

...

So, anyway... I've been on the Parkinson's medication since Tuesday night, and today has been mostly spasm free. My pain levels have dropped significantly, since I'm no longer dislocating and subluxing every 2 seconds, and the side effects of taking the meds have started to wear off.

YAY!

In other news... On January 19th I had my appointment with my geneticist. He put in a request for an MRI to check for a Chiari malformation. He told me not to be surprised if there was a 6-8 month wait before I got it. I got a call today saying there had been a cancellation, and they can do the MRI on Monday!

YAY!

So I would guess within the next 3 weeks, I should have a diagnosis of some sort, and a lot more information under my belt (if all my test results make it to the people that need to see them, and I get called to discuss them, that is...).



This is my best friend's baby, snuggling up in one of the blankets I made for her. Isn't she precious?