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Friday, May 04, 2007

WTF Update

This MIGHT just be something. I'm not going to spell things out, because when the people who should have been researching this for the past year start researching it, I don't want them to end up here.

Last July, I told the New Rollogist, as I had told others, that my gut told me that something went wrong during the kidney stone procedure. Specifically, I believed that metal (Ti) clips in my body from a prior surgery were damaged, and the particles from them were now poisoning various systems in my body.

He said, "That couldn't happen. If that could happen, we'd all know about it."

A couple of weeks ago, he agreed to "humor me" and finally test for metal poisoning. His testing instructions weren't clear, so the lab called him to ask for clarification. He told them (dismissively), to test me for whatever I wanted to be tested for. I am not a medical professional. I came up with 3 or 4 metals, off the top of my head. The one I most wanted to be tested for was Ti. The lab tech wasn't sure if the blood test ordered would test for Ti, so she asked if a urine test would be OK. I said yes; the doc on the phone basically said, "whatever."

Earlier this week, the New Rollogist called to tell me that all the tests were negative, including the blood Ti test. OK, so my hunch was wrong. Then I said, "Can you think of anything else at all to test me for?" He said that he hadn't even thought of those things, they were my idea. I hung up and cried.

Today I went down the road to visit a friend for about 30 minutes. A visit that I desperately needed. When I returned, there was a message from the New Rollogist. The Ti urine results came back. I have FIVE TIMES the safe amount of Ti in my body. He doesn't know what that means, and suggests that I see a toxicologist.

I don't know how this will turn out. But it MIGHT be something. Finally.

Have a good weekend, Ratsasstafarians. Ace your tests and respond well to your treatments. You know who you are.

54 heads are better than one . . .

Blogger Ern said...

HOLY CRAP! Frickin' doctors! But to know...Happy Friday indeed!

*HUGS*

 
Anonymous Elizabeth said...

I had a very similar situation..my gut was telling me one thing and I went through various doctors trying to get just one to listen..finally one did,after a few years and many tests...I begged him to just look, he did reluctanty and guess what...I was right. Good for you Susie!! I hope it's the answer!

TGIF!

 
Blogger Sukie Bitchmont said...

Man...aren't doctors supposed to be the ones that think of these things. If doctors like that didn't make us feel so paranoid when expressed our gut feelings, we'd be a lot better off. Hope it all works out for you.

 
Blogger Traci said...

OMG!!! Did I tell you that test had something to do with it or what????!!!! Halle-freakin-lujah!!! This has got to be something good!!! If I had your phone number I'd call you right this minute! teehee...

 
Blogger Circus Kelli said...

OHMYGOSHOHMYGOSHOHMYGOSH!!!!

I'm SO EXCITED FOR YOU!!!!

Don't you kind of want to flick the nose of the "whatever" doc and say "A-HA! TAKE THAT DOODY-HEAD!"

I would. :D

 
Anonymous soozieq said...

This just has to be a step in the right direction. IT HAS TO BE!!! Whoot-woooo!

Have a great weekend.

 
Blogger Effie said...

weeeeelll then...that shows you how much they know! Maybe there's a fix to this after all!! Hallelujah!!


Hugs & Love!

 
Anonymous Smoochdog said...

WOW - Good for you for fighting for what your gut tells you. I hope the toxicologist can give "it" a name and some instructions for making it go away!

 
Blogger Squirl said...

I've felt that was it ever since you mentioned it last year. I believe in coincidences not really being coincidences. There was a reason that you just happened to read that article that day. I'm so excited for you!

Bucky's sitting next to me and has asked that I tell you hurrah! from her.

This could be it. fingers crossed

 
Blogger Mr. Bloggerific Himself said...

I REALLY want you to come to the bottom of this and get better, but HOW many times do I gotta tell you people!?!?! HEAVY METAL ain't noise pollution!!

*throws hands in the air*

 
Blogger Von Krankipantzen said...

Well, HOLY SMOKES! This is veeeerrry interestink. I always think that one knows their body far better than any doc and that gut feelings should be acted on. It is so difficult to advocate for yourself when you are being challenged by the 'experts'. Here you are, a strong smart woman going to the best docs and having trouble being heard.

I look forward to what further news you get and what is next for you treatment-wise. Finally 'something' after a whole lot of nothing.

 
Anonymous Allisone said...

OOOOOOOOO!!!! Tenatively excited, fingers crossed, knees bent.

 
Blogger Lynn said...

I knew it!!! I just freakin' knew it!!! OMG, Susie!! This is incredibly wonderful news. You can detox from that! Been there with mercury... and I'm all better with no permanent damage. If you need support you can call on me. I will do anything to help you. I love you, Susie. I'm so glad I came over here. I've had a disappointing evening, but THIS -- this is wonderful.

 
Anonymous Sharkey said...

Oh please, ohplease, ohpleaseohpleaseohplease let this be it! Thanks for the update.

Have a good weekend!

 
Anonymous dawn said...

WOW!!! OMG, that's excellent.

I'm so glad you listened to your gut. Please,please,please let us know how things go from this new finding? i wish you well,Susie.

 
Blogger Toady said...

Such fabulous news! Good thinking!

 
Anonymous lazylightning said...

OH WOW! I hope it works out that your gut was correct!! Here's hopinge

 
Anonymous RitaPita said...

I rarely comment anymore, but I always read.

Keeping you and yours in my thoughts and prayers.

 
Blogger Susie said...

ern, I know you won't be one of THEM. Hugs back :)

elizabeth, I'm sorry you went through that, but thankful you're OK now. I hope to have a happy ending story to tell, too.

sukie, you're so right. This past year, I've been disabused of a lot of my ideas of what doctors were supposed to do. In my experience (I think I've seen about 16 of them now), they do not think of things. Period. Sad, but true.

traci, I know. I'm alternating between delight and horror -- if this is what I thought it was, I've been seriously poisoned for over a year, and it continues. With a type of poison that there's not much info about.

ck, this is a weird time; excitement, confusion . . . and of course nothing can happen until next week, when I'll begin the search for a doc who has a clue.
I'll be thinking of you today as you zip through your Sexy test.

soozieq, yea, it does, right? Yea.

effie, thank you, honey. I hope you're having fun at your wedding. (Well, not YOUR wedding....)

michelle, thank you; and yes, those instructions are what I really want, even more than a name.

squirl, I believe that, too. The test that showed this is not even one that the doc ordered. It really was as a result of his being a smart ass, "test her for whatever she wants..." It's a God thing; I hope.

mrB, I have urinatic proof that HEAVY METAL POISONS! (Actually, Ti is a light metal, but I still stand by my urinatic proof. Just so I can keep saying "urinatic.")

kranki, yes, finally something. There should be a whole big unit in med school on "The Patient Lives Inside Her Body, So She Would Be the One Who Knows Best What's Happening in There." Well, maybe we could come up with a catchier title, but still...

allisone yes, me, too :)

lynn, I will definitely check with you if I head in that direction, which it looks like I will. If I am being Ti poisoned, I would guess it will mean surgery to remove the large Ti that is still in my body, and detox to get the particles out. (?)

shawkey, yes, plus ohplease... let there be a way to fix it and reverse the damage. Thank you.

dawn, thank you, I will definitely keep y'all updated. I don't know how quickly things will move, but I'll definitely begin searching anew first thing Monday morning.

toady, thank you. It's been my primary thinking for all this time, but no one wanted to hear it. It still may not prove to be the cause of my illness . . . but maybe it will.

lazylightning, thank you. Hope is good.

ritapita, so nice to see you. I've seen you on flickr, but lost your blog. Thank you for the prayers, much appreciated.

 

At last....interesting news indeed. Keeping fingers crossed, prayers ongoing. ("Ratsasstafarians". Hee!)

 
Anonymous Ortizzle said...

WOW! Proof that our own instincts and stubborn insistence get us farther than a lot of doctors. The only positive thing about your doc is that he let you test for whatever you wanted. Forge ahead my dear, I am so hoping that you have finally gotten to the bottom of it!

 
Anonymous Jeannie said...

SONOFABITCH !!!!
You told them all and they simply did not listen. First do no harm.. What harm is done in listening?

We have a date. When you are ready and in better form we will be kicking some doctors ass from one end of your pretty mid-atlantic state to the other.

 
Anonymous Barb said...

Holy Crap! You said a LONG time ago that you wondered if the lithotripsy caused Ti to be released from internal staples.

You can delete these links from your blog if you want, but I HAD to send them to you.

MOST intersting..a lab that tests for metals has a specific link to Ti "allergy" which mentions skin problems and muscle fatigue!

Lab: http://www.melisa.org/

Ti link: http://www.melisa.org/titanium-allergy.php

Best wishes to you in getting to the bottom of all this and on the road to recovery! Maybe we will see you on TV and in print, as a "poster girl" for public awareness of WTF or mystery illnesses!

 
Anonymous trophywife said...

oh wow oh wow oh wow! I'm so crossing everything I have for you and praying that this is the answer.
That *&#*# new rollogist needs to open up his closed little mind and actually listen to his patients. I hope you'll be able to pffffft in his face and tell him you were right!
Hope you get to see the toxocologist soon.

 
Blogger Nina said...

Pushy, pushy, pushy sometimes you just have to be.
Hope you have a great weekend, darling Susie. Keep pushing on and being pushy.

"He told them (dismissively), to test me for whatever I wanted to be tested for."

Dr. John thought this was pretty lame on the Rollogist part. But then he added that he would imagine that the Rollogist couldn't think of any of the top of his head. So it is a good thing the top of your head is better than his. :)

 
Anonymous Tina said...

Allisone and Circus Kelli said
and...well everyone else!,
YEA!!! it's something!!

 
Anonymous Tina said...

I meant to say "WHAT" Allisone and Circus Kelli said
and...well everyone else!,
YEA!!! it's something!!

 
Blogger The other me said...

OMG OMG!!!! That's just ...whatever the best word in the world is, that's what it is! and WELL DONE YOU for sticking with it and making them listen. WHOOHOO!! Great news.

 
Blogger Bucky Four-Eyes said...

Have you thought about selling urine samples on eBay as souveniers for the Ratsasstafarians?

Man, oh, man, I think I'm nearly as excited about this as you are, Eugene! I so want to go with you to that fartface new-rollogist when you flip him off and say "I TOLD YOU SO!"

 
Blogger Andrea said...

What Bucky said! And Sukie as well, WTF indeed, with doctors treating people so dismissively.

Susie, OH I so hope this turns out to be something that can be fixed...

 
Blogger Susie said...

htgt, thanks, honey. Amy came up with Ratsasstafarians. I love it :)

ortizzle, I'm excited and scared; but that's 50% better than I usually am, these days :)

jeannie, OK by me :)

barb, thanks for the links. If the docs I see don't know how to test further for Ti, I will show them. Emeffers outta be paying me tuition, for all I'm teaching them. Yes, I will definitely be featured on Mystery Diagnosis!

trophywife, thank you, sweetie. I hope all of that, too.

nina, I do believe the man has always thought I'm nuts. And as one of the better doctors I've seen put it, "Even if you are nuts, that doesn't mean you're not sick." This guy isn't the type to admit that he was wrong. Whatever. As long as I get to someone with a clue. Finally. What amazes me is that this result did not come about as a result of his testing at all, but mine. He thought the metal testing was a joke. Ha.

tina, it's always something ;)

t.o.m., you are a love. Especially when I know that you're waiting anxiously for your own best words in the world. I'm still praying for you and the fam.

bucky, no, but I have been picturing a posse in the rat's ass T-shirts.
And I like your idea of going to the doc with me. Maybe a whole delegation from here. We could get liquored up and lacquered down . . . heeee

andrea, thank you, honey. I am very thankful for this little cheering, praying, vibrating section that has shown up here. It really touches me. Right there. xxx

 
Blogger M&Co. said...

Oh it would be wonderful to know what it is and hopefully to be able to repair it.

 
Blogger Lynn said...

Yes, Susie, it does make sense that the removal of the clips would be step one.

AND...

You guys are going to get liquored up before you storm the docs office? Call me. I'm the perfect tea-totaling driver. Remind me to blog about the time my husband and I got pulled over with a bag of pharmaceutical-grade baking soda in the glove compartment. It's a classic.

 
Blogger Squirl said...

I think that asking for that urine test was a brainy idea.

;-)

 
Anonymous RzDrms said...

I. KNEW. IT. i was totally behind you on that one! d@mn. i knew it. i pray that's it and they can fix it and you get better. all better. frick. best news i've had in a while.

 
Anonymous RzDrms said...

p.s. eugene, i love you. :)

 
Anonymous kalki said...

I have chills reading this, just because it is almost always the case that we know our bodies better than anyone else. Including the experts.

You are getting closer to an answer, Susie. I can feel it.

 
Blogger mrtl said...

Hopefully the frustration will soon be over.

Love to you!

 
Anonymous kalki said...

Back again, just to say that I am SO excited about this! Jubilantly so.

 
Blogger Susie said...

m&co, yes; especially the repairing part.

lynn, that does sound like a classic story :)

squirl, PWAHAHAHAAAA!

razz, I do hope it's good news; I think it might be . . . so many variables, I'm reluctant to get too excited.
Eugene :D

kalki, I shall defer to your good feelings about this; I'm too twitchy to trust my own right this minute.

mrtl, after all this time, it almost seems beyond imagining, but I hope, I hope...

 
Blogger Amy said...

Oy vay the dismissiveness of doctors sometimes. As my grandma used to say, "I could cheerfully shoot him."

But Oh! An Answer Maybe! THAT just about fills my heart with flowers for you.

 
Blogger sometrouble said...

OH WOW! I really hope this leads you somewhere! Keep us all posted on it, k? Sometimes I wonder what those doctors were really doing all those years in med. school.

 
Blogger Platypus said...

Good grief, I go away for a few days and all these developments happen! I can't tell you how pleased I am for you that you may finally have your answer. Sending all my good thoughts your way, every day, as usual.

Yay for urinatic proof of WTF!

 
Blogger Momentarily_Distracted said...

"Paging Dr. House...bring your cane and a bottle of Scotch."

I'm glad you have found some kind of breakthrough in your search for the WTF mystery. Now if only these doctors can cure you. Geesh!
My second cousin thinks that some doctors take their MD (medical degree) to be something else (minor diety). I come from a long line of cynics. :P
*fingers still crossed for you*

 
Blogger WILLIAM said...

I am a little late to this postbut I just wanted to say I am somethwat thrilled by this discovery. Now I am not sure if thrilled is the right word to use in this type of thing...but I think you know what i mean.

 
Anonymous sheryl said...

Every time I come here since you posted this, I'm afraid to post. I want this possibility to lead you to freedom from wtf so badly. I gotta grow some balls!

Sending you love on top of more love. Not that kind of love.

 
Anonymous jomama said...

I just want to cry and jump for joy. I can't believe how rude those doctors were to you. They owe you an apology.

 
Blogger Susie said...

amy, you're so funny. I always think of you as having a flower-filled heart :)

sometrouble, they were studying something other than their "listening skills." This much I know.

platypus, thank you, dearest, and thank you for using the word(?) urinatic. :)

MoDis, I do have some friends who are docs, and they are lovely, kind people. But the ones I've had to see this past year . . . make the rest look bad.

william, thrilled is good. We like thrilled ;) It's good to see you here. I hope your househunting is going well.

sheryl, we'll be watching your flickr pix, because I'm sure you'll share when you uh . . . grow some. ;)

JOMAMA!, hi, honey! I just wish they'd do their jobs with kindness and integrity . . . humility . . .

 
Blogger lawyerchik said...

"Good grief, I go away for a few days and all these developments happen!" - DITTO here, too!

Hopefully this will be good - who'd a thunk that what made Wolverine super-strong would not be so good for non-X-men types..... Hoping for very good news in the very near future!!

 
Anonymous LadyBug said...

I was surprised to find myself holding my breath as I read the end of your post. I'm so sorry the New Rollogist was such an ass with you, but praise God for your persistence. I certainly hope this new development leads to the answers we've all been hoping so desperately for you.

 
Blogger Kat said...

I am so happy that you have "something" to follow up with! I think that when you go in for your next appointment that you should ask him if you can get a degree since apparently you had to diagnose yourself! Stupid rollogists!

 
Blogger eclectic said...

Geez! It's 'bout freakin' time too, I'm thinkin'! I pick this week to be offline with home improvements???? Gah! This is great!!! Now, when are they gonna figure out the next step?

 
Blogger Annejelynn said...

something's gunna be determined - somethin' for sure!

 
Blogger Redhead Mommy said...

I am so glad you finally have something to follow. A friend of mine has a very super rare autoimmune disease. She went to several doctors and nearly died before they figured it out. Even now, that she is the ONLY person every documented to go into remission within six months, her specialist will not admit that it is her complete change in diet that has done it.

What it it with doctors??

 


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