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???

*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.

7 comments:

Saurou said...

I think we've all been there.

me: [insert horrible pervasive symptom here]

DR: Well, everything came back normal--great even.

me: Okay, now what?

DR: *shrug*

fantastic. UGH.
I hope you start getting some answers, at the very least from this new Rheum doc. And until then, we'll be thinking about you. Take care!

Veronica said...

Hey look! I found someone for you to grump at. http://morgandawn.livejournal.com/friends/eds

She's got some kind of feed syndication going on, it's posting whole posts from a few of the EDS bloggers (Bendygirl, etc) - my links were only a few sentences and a link, but I found whole posts of yours over there.

Gentle hugs for everything else going on. xx

Achelois said...

Wow Veronica that is weird I am typing my response and yours popped up. Other side of the world on the same blog together. Iam utterly freaked out.

I am so sorry you are having such a twitchy horrible time. I wish you could just feel better.

To Saurou sitting as you are in your profile picture does not help your joints! I know I am 45 and have sat like that all my life!! My physio shouts at me for doing it as I try to explain I didn;t realise I was.

elise said...

Ugh! I can't believe it is taking them this long to figure it out. Wait a minute, did I just say that?! Nothing is ever easy for us, eh?

Have you had a blood panel for vitamin and mineral levels? It could simply be a magnesium or Vit B deficiency!

When I found out about the link between Vit D and pain, I asked my doc to do a blood test. She was shocked at how low my level was and immediately prescribed a dose to get my level up to normal quickly. Now I am on a daily maintenance dose and think the balanced level has helped in some respects, plus vit D is essential to calcium absorption.

Docs don't think to look for the most basic of things when asking for blood samples. Sure, it is nice to know what your cholesterol and blood counts are. They check for iron because of anemia. However, what about the risk of scurvy from living in Canada in the dead of winter when there is little Vit C to be had? Oh, that was a hundred years ago, sorry. They ship oranges to you now! :D

Anyway, in all seriousness, my heart goes out to you. I hope you are able to find answers soon and try not to be too hard on yourself with the move. Please?

Love you. ~e

BubbleGirl said...

Saurou,
Thanks for commenting. It is a common conversation for people that deal with medical professionals on a regular basis. It's just so annoying. It's almost like they have no curiosity, or that they don't care. "Well it's not what I thought it might be... so have a nice life!" It's like getting the cold shoulder.

Veronica,
Thanks for the heads-up! I didn't know about my blog being reposted. At least they're linking to me. I apparently signed up for a live journal account, but I never got past the user name stage.
Thanks for the hugs too!

Achelois,
Thanks for the comment. I wish I could just feel better too.
I hope all is going well for you and yours.

Elise,
I thought of vitamins and minerals too, but he had them all checked, and the levels were within normal range.
I've been taking 2000mg of vit C daily for almost a year now. I added 1000IU daily of vit D, and the doctor put me on a high dose of iron as well.
It's odd that you mentioned scurvy... If you look up the cause and effect of scurvy, it's practically severe, yet treatable EDS. Due to the vit C deficiency, the body stops producing collagen.
Hubby is handling all the heavy stuff when it comes to moving, and I'm taking my sweet time. I've got until Sunday to have everything out, and the place cleaned. It's going to be a bit of a rush at the end.

Love and hugs to all my commenty ladies!

stipeygirl75 said...

I have been there soooo many times! They always tell you you're normal and the smart-alecky side of me wants to say "WELL then why is x, y, and z still HAPPENING?!"

I just had that a couple weeks ago in fact, with someone who was supposed to know thyroids. Said my thyroid was completely normal and have a nice life.

I was sooooo angry at being patted on the head and told to go on my way!

It's been so bad for me that I avoid doctors as much as possible now. I try to figure it out on my own by researching and talking with other EDSers. I resort to going to docs only when I can't stand it anymore :-\

For spasms you might also want to look into magnesium. Most people don't get enough and so I drink this kind called Natural Calm. It tastes good too! Chocolate is also high in magnesium. That's my excuse to eat more of it :-)

Saurou said...

@ Bubblegirl: That's exactly what it is--they can't bothered to care if it's not a "nail" and all they are carrying is a "hammer."

@Achelois: Thanks for the heads up, but I only sat that way for the photo, and I'll do it for the docs who ask for "those neat tricks"--but with my bursitis, it's not how I naturally sit. But it's a good point to make, so thanks for the advice! :)