Wednesday, February 24, 2010

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???



"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.

Thursday, February 18, 2010


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!

Thursday, February 11, 2010


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.

Friday, February 5, 2010

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.


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!


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?

Wednesday, February 3, 2010

Parkinson's Pills

The Parkinson's medication seems to be helping... Which is really nice (albeit somewhat scary). I take one pill every 8 hours, so I've taken 2 so far. Next one at 2pm. I'm still getting the spasms, but they don't feel nearly as powerful, and they are more spread out (time-wise).

I don't know if it's the pills, or the pain from so many spasms, dislocations, and subluxes, but I didn't sleep more than an hour last night.

My left shoulder, which has been hit the hardest by the dislocations and spasms, feels like it's on fire. I just want to go lay down in a snow bank.

I'm not sure if the dose is too small, or if I haven't been on the pills long enough, but the one I took at 6am started to wear off around 10:30am.

I am so EXHAUSTED. I feel like I ran a marathon, on my hands...

Tuesday, February 2, 2010

*SPASM* ... *SPASM* ... *SPASM!!!!!*

Since early last week, I have been experiencing upper chest/shoulder spasms with increasing frequency. I've had them once or twice a day for several years, but in the last week it has gotten progressively worse, until yesterday the spasms were occurring no more than 10 minutes apart.

It is very difficult to do anything, and I don't know what is causing them. They seem to occur more often, and more severely when I am trying to use both of my hands simultaneously. They are very painful, they are causing my shoulders to sublux, and they are making it somewhat difficult to breathe normally.

Preliminary research on the internet suggests they could be caused by TSH imbalance, iron deficiency, renal failure, or diabetes. I am currently awaiting blood test results which could possibly rule out 3 of those.

I am once again wondering "Why me?" What else could possibly go wrong?

I shall be going to the walk-in clinic this afternoon, once I get off work, and possibly call my chiropractor for an appointment. Maybe even a masseuse. Anything that could possibly help would be nice.

I am exhausted.

You may call me "Spaz," I won't mind.

Any and all advice would be greatly appreciated.

On a lighter note, my best friend had her second baby, a healthy little girl on Thursday, and she is so cute, and little (a bit over 7 pounds). I made her 2 little blankets, and her big brother (13 months) loves them!

Edit* For updates, I occasionally comment on my own posts.

Update: After work, I went to the doctor, and he prescribed a medication for Parkinson's disease, as well as sending me for more blood tests.