Author Topic: Update  (Read 9156 times)

flutterfly

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Re: Update
« Reply #15 on: January 20, 2011, 11:46:29 AM »
 :-* hey sha bebe~'member when we called doc d the vitamin ^D^ natzi? well maybe just maybe she knew what she was talkin' 'bout !

i know it sounds so simple huh!

the sun vitamin was depleted in this pixie also! MINE WAS 16! Yay me!
but after the last drug reaction she's 2 scared ta put me on anythin' but flinstone vit & that new mantex super b6 b12 & folic so i REALLY hopes she passes that tidbit on ta the other arsenal of new docs!;D

me luva u terri※bly!

~flutterfly...lookin'up vit.D side effects @ mass doses! uugghh! sorry kid!*~
« Last Edit: January 20, 2011, 11:48:05 AM by flutterfly »

Sha

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Re: Update
« Reply #16 on: January 20, 2011, 07:24:44 PM »
Diane~have ya had any side effects? Uhhhgggg dreading starting that dose!

Genko~Thanks Genko! I did have a x ray that showed a bone island and spurring, but I don't think he is worried about it. He has mentioned spondyloarthropathy of some sort. I agree....it could be any of a number of things...I have had kidney stones, which can cause terrible  back pain...ya never know what it could be...isn't that why we have the docs!LOL :D

Flutterfly~Yeppers I do, but she only wanted me on 1000....that's not bad now that I think of it!LOL Love ya too!

UPDATE TO UPDATE
Missed dr Peng's phone call and he had left message saying if he understood the message right....I wanted more info on Lupus, RA, spondarthropathy, and sjogren's. He then gave me some websites to check out and said he would cover those dx's on my next visit, but if i had any other questions to call back....UH, YEH....didn't get the message right cuz I was ASKING if he had dx'd me with any of the other AI stuff he gave me pamphlets on besides sjogren's cuz that was all my labs and test were definite on...positive for sjogren's!!!! ???

So I called back and talked to same guy that took the first message and he said he would have dr peng call me first thing in morning cuz he gets in early and call before I go to work! YAYYYY!!!

So now I wonder if that is what he has dx'd me with since he again was giving me places to find info on those!!

Thanks for listening!!

Sha

Sha

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Re: Update
« Reply #17 on: January 20, 2011, 09:50:05 PM »
Quick question....what should I ask him tomorrow morning? gotta keep it short cuz he is doing it as a courtesy cuz I have an appointment on feb 11th, so I'm sure he will refer a lot til then...

Sooki

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Re: Update
« Reply #18 on: January 20, 2011, 10:39:12 PM »
Feb 11th?? That seems so far away.  Be sure to ask how to get some relief from your back pain.  Sorry it's so long until then...  Ask about the vit D, but make sure he knows what's the most urgent issue.  Hang in there!
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
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Sha

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Re: Update
« Reply #19 on: January 21, 2011, 06:48:31 AM »
Thanks sooki~ It is soooo far away, but I gotta be a mom first....my 10yo is having her tonsils and adenoids out on the 3rd, and I can't make the appointment before then, but also  have to wait til I feel like i can be 4 hours away in case of emergency :o So, I told em I would be okay with 9+ days out from her surgery, which of course, Jeff made me one at 9 days out from the 3rd :D

I am right now waiting for his call  which he should be in the office around 7 am....did i mention i hate waiting!!!LOL ;D

Sha watching the clock like I was a kid waiting for xmas! :D

JannaLee

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Re: Update
« Reply #20 on: January 21, 2011, 07:36:00 AM »
Sha,

Do you have a copy of all your lab results?  My doc is kind of mysterious like yours.  He said things like, "These diseases have a way of morphing into one another." and "Your hair loss is due to the Lupus component." and his nurse gave me Lupus pamphlets.

About a year ago he did more tests and never said a thing about the results.  I got a copy of them and read in the "notes" he dictated I have "serologic change to indicate Lupus."

Well, I certainly would have liked to hear this!

Good Luck and keep asking questions!  After a couple times of having to call you back he might learn you are one of those patients that want to know what's going on!

Janna

Sooki

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Re: Update
« Reply #21 on: January 21, 2011, 08:26:57 AM »
Sha,  Mom work does seem to come first.  I hope your little one weathers the surgery well.  Tonsils are a bigger deal to kids than surgeons say.  It's good that she knows you're there for as long as she needs you.  Take care.
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, doxycycline, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, D-mannose, Paleo AIP, fish oil, Cliradex wipes

flutterfly

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Re: Update
« Reply #22 on: January 21, 2011, 11:13:39 AM »
 :-*  hey sha bebe~

WHAT'D HE SAY?

HUH? HUH? HUH? spill it!

luva u brat!

~*flutterfly…now forced ta wait 'til sissy gets break & thumbs us!*~
« Last Edit: January 21, 2011, 11:15:53 AM by flutterfly »

Joe S.

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Re: Update
« Reply #23 on: January 22, 2011, 05:40:55 AM »
Sha, it is Saturday and you have been processing for a while. Good, Bad, or indifferent, what did he say?

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Patze

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Re: Update
« Reply #24 on: January 22, 2011, 05:52:46 AM »
Count me in as also waiting for some info. :)


Patze
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tired of it

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Re: Update
« Reply #25 on: January 22, 2011, 06:48:10 AM »
Sha,

Do you have a copy of all your lab results?  My doc is kind of mysterious like yours.  He said things like, "These diseases have a way of morphing into one another." and "Your hair loss is due to the Lupus component." and his nurse gave me Lupus pamphlets.

About a year ago he did more tests and never said a thing about the results.  I got a copy of them and read in the "notes" he dictated I have "serologic change to indicate Lupus."

Well, I certainly would have liked to hear this!

Good Luck and keep asking questions!  After a couple times of having to call you back he might learn you are one of those patients that want to know what's going on!

Janna
Janna,, dont you just love how they seem to (forget) to tell us what they think,, good, bad or whatever,, and if it did indicate Lupus, that seems to me like thats kinda something you might need to know, we start piling on these AI things, and treatments change,, yet there content on just writing them in there notes, then your folder goes back on the shelf with the other poor souls

JannaLee

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Re: Update
« Reply #26 on: January 22, 2011, 07:13:14 AM »
Tired,

I am struck by your last sentence.  The mental image of my lab results, medical notes, diagnosis, etc. filed in a room/computer with a million-jillion others makes me realize how important it is to get copies for myself.  How tenuous the chance they never lose my very expensive and hard earned medical story!  Then what would I do??!!

Certainly putting it in that perspective, it's no wonder the doc. didn't remember to tell me his analysis.  I wasn't there when he looked at the lab results.  Too bad he didn't read back a paragraph (to his own remarks) when I was there.

Thank you for letting me vent.  I love you all!
Janna

Sha

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Re: Update
« Reply #27 on: January 22, 2011, 03:18:07 PM »
UPDATE TO UPDATE AGAIN: ::)

First off....thanks to all of you guys for ALWAYS being here for me! I have been super busy the last couple of days so haven't had a chance to post to anyone, so i am going  to try to make it quick cuz gotta go get soccer stuff back out cuz it may be starting as early as tomorrow for private lessons!!  :o

Dr. Peng called just as I was going out the door for work, but got to talk to him for about 10 minutes before I had to RACE out the door.

He said he has a definite dx of sjogren's and spondyloarthropathy (probably ankylosing spondylitis). He said the others like Lupus , RA, fibro are probably mixed in there some how, but not as severe as the first 2 right now. He said no matter what I get dx with, most are treated with the same treatment , but he would try to clarify all that on Feb 11th.

He is the type of doc that cares more about symptoms than a positive blood test!! He actually said that they used to not dx ankylosing spondylitis til it had gotten where the spine was completely fused together, but now if ya show the symptoms they are more apt to dx early so it can start to get some treatment!! Same with all the other AI stuff...If it looks like a duck, quacks like a duck and walks like a duck.....then it is probably a duck!! :D

He also said that he wants me to go to a hearing specialist cuz he thinks I may have NEUROSENSORY HEARING LOSS and that is why I can't stand the lil sounds and smells etc....said it can affect more than just the hearing! He wants me to bring my report with me!

Oh yeh...I may be going through early menopause ::) Dear god....I'm only 35!! Won't go into a lot of details otherthan my time of month has lasted 22 days so far and no end in sight!!!!!! ::) so a gyno appointment is also in the near future!!

I'm sure I left more out than I will post later, but am trying to catch ya up before I am back on MOM mode!LOL

Sha who is off to see if we need new cleats or shinguards etc...now where are those soccer bags :D

brownskin510

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Re: Update
« Reply #28 on: January 22, 2011, 07:04:57 PM »
Wow Sha, I'm glad to hear that you finally got some definitive dx, although I hate that it is AI. But at least maybe now you can get started on a workable tx plan. At this point because your dx is AI, I, personally, don't think it matters which you have because like Dr. Peng said, they are all pretty much treated the same, hence the MCTD [mixed connected tissue disease]. It seems like once you get one, you get several. Well, Sha, girl, we are ALL in this 2gether :D.

Ps, you need to SLOW down a lil

Sooki

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Re: Update
« Reply #29 on: January 22, 2011, 10:26:28 PM »
Hi Sha.  I glad you finally got to talk with him.  Sorry about the spondylitis dx.  It sounds like he has some treatment options in mind.  Interesting  about it being hearing loss that makes you sensitive to sounds.   Here's a wish for you that the next few weeks slide by easily; your daughter heals quickly; your back chills out; and your daytime kids run slowly.
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, doxycycline, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, D-mannose, Paleo AIP, fish oil, Cliradex wipes