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machias



Quit Date:
September 17, 2007

Posts: 94
Location: Florida

PostPosted: January 7, 2008 7:19 PM    Post subject: more blood Reply with quote

Well tomorrow marks the 7th month of being sick. Today was a bad day and hoping tomorrow will be the same as maybe then the doctor will understand what is going on with me. Hopefully the last blood test will show something or maybe these new one.

The new symptoms are even more wierd then the older one. Similiar but just getting worse. I now feel like my bones are cold (you in the north will understand that feeling) but remember I am in Florida as I am shivering my skin is burning up. So I shake and bite my lip (in pain) at the same time.

I felt sorry for the chasier today she asked if she could do something for me-and I said Thank-you I will be fine" then she said well I will pray for you.-I wish she would pray for the doctors to find out what is wrong with me. Well wish me luck tomorrow
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Seabrez



Quit Date:
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Posts: 4458
Location: Gulf Coast

PostPosted: January 7, 2008 7:51 PM    Post subject: Re: more blood Reply with quote

machias wrote:
I wish she would pray for the doctors to find out what is wrong with me.


And that is exactly what my prayer for you will be! Wink Wisdom and insight for the doctors to pinpoint the cause and find a solution.

Barb...I know it's so frustrating to have problems and not know the reason. Maybe seeking a second opinion would be helpful. Keep going, and don't let them just blow it off....continue being persistance and demanding answers.

Big Hugs!! {{{{{Barb}}}}
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Deb

Therefore if anyone is in Christ, he is a new creature; the old things passed away; behold, new things have come. 2 Corn 5:17 NASB
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kannprint



Quit Date:
April 10, 2004

Posts: 4988
Location: St. Louis, MO

PostPosted: January 7, 2008 8:37 PM    Post subject: Reply with quote

I, too, am sending hugs and prayers. Prayers for you and for your doctors. I can only imagine your frustration!
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kevin
Site Admin


Quit Date:
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Posts: 9538
Location: cincinnati, oh

PostPosted: January 7, 2008 10:01 PM    Post subject: Reply with quote

hope you get some kind of answer tomorrow, barb.
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kevin

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Mary Dude



Quit Date:
June 15, 2004

Posts: 4803
Location: Pittsburgh, PA

PostPosted: January 8, 2008 2:33 AM    Post subject: Reply with quote

I'll add my prayers for understanding and healing....hope you get answers soon!
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Mary D.
Smoke-free one day at a time!
Worry doesn't help tomorrow's troubles, but it does ruin today's happiness!
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Pamela



Quit Date:
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Posts: 3542
Location: Gardiner, NY

PostPosted: January 8, 2008 11:48 AM    Post subject: Reply with quote

Stay strong, and just don't smoke no matter what.

It sounds horrible, cold bones. I hope you can get it figured out and fixed!
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daggy12



Quit Date:
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Posts: 678
Location: Palm Bay, FL

PostPosted: January 8, 2008 12:07 PM    Post subject: Reply with quote

Hugs!! {{{{{Barb}}}}
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machias



Quit Date:
September 17, 2007

Posts: 94
Location: Florida

PostPosted: January 8, 2008 5:40 PM    Post subject: questions Reply with quote

I would love to say I went to the doctor's and 2 hours later he said "Oh my gosh you have...." But two hours later I heard "maybe your rheumotologist or Neurologist will have an answer when you see them on your next visit. Oh and by the way you Sjogren's antibodies have increased since your last visit from 1.41 to off the charts at 4.3"

For seven months I have heard that my positive Sjogren's is a secondary disorder not a primary-why? I never got a clear answer why it can't be primary-

I came home (no I did not buy a pack of cigarettes-my first choice would have been a gun anyway) and went to sleep for 3 hours. Woke up determind to try and figure this out--so low and behold I did more reseach and discovered Sjogren's has a 50/50 chance of being the primary disorder.

I joined the Sjogren's foundation-what the hell I saved money not buying cigs. They gave me a local telephone contact. Very nice women and low and beyond she has a support group and has my symptoms-she shivers in 85 degree weather and burns at the same time. It was not all positive-and I may end up in a wheel chair but with a support group maybe we can wrap ourselves in heavy blankets and race.

The good news is I will see my rhuemotologist with tons of information and if he can't help me I have the name of her doctor who is a women (which is always positive) and has knowledge of this. And I may be totally wrong about what is going on with my body--but lets face it my doctors aren't having much luck with this either.

Not really sure how I am feeling at this point--but I am determind not to let this get me-I have made my travel arrangements to go to DC with my husband.

So thanks for the support
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Seabrez



Quit Date:
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Posts: 4458
Location: Gulf Coast

PostPosted: January 8, 2008 7:11 PM    Post subject: Reply with quote

Well, kinda bittersweet isn't. Personally...if it was me...I'd make an appointment with the woman doctor who understands this particular antibody you speak of. You could waste precious time visiting the other docs to no avail. And if both sets of doctors get going on the whole thing and finding answers...than that is just all the better! Wink

Keep reading and talking to the support group...as I know you will. They would know the ins and outs and help head off any detours down the healing path.

Glad you did finally find some info, even if it didn't come from the doctor. Have a good time on the trip with hubby!

Big Hugs!!!
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Deb

Therefore if anyone is in Christ, he is a new creature; the old things passed away; behold, new things have come. 2 Corn 5:17 NASB
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Cowgirl UP!



Quit Date:
July 26, 2004

Posts: 5029
Location: Ala

PostPosted: January 8, 2008 8:46 PM    Post subject: Reply with quote

Gosh Barb, 7 months and still no answer but, I see you still have your sense of humor and it will get you through.....you can go in smiling and blasting away with your toy water pistol...to bad you don't live in Texas, you could also dunn your Ranger badge.

I am so glad you found a support group and a personal contact who not only sympathizes with your symptoms but actually has them...this has got to be a relief to know you are not alone in this ailment. (but then I am a wuz and would want to know someone else was with me). It always amazes me that with all the modern technology we have today, a diagnosis and cure is not always immediate.
Kay
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kannprint



Quit Date:
April 10, 2004

Posts: 4988
Location: St. Louis, MO

PostPosted: January 8, 2008 9:31 PM    Post subject: Reply with quote

Sounds like you're on the right track whether your doctors are or not. Stick with that support group and, if all else fails, see the doctor your new friend recommends. Sounds like she understands your symptoms better than your present medics.
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kevin
Site Admin


Quit Date:
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Posts: 9538
Location: cincinnati, oh

PostPosted: January 9, 2008 1:34 AM    Post subject: Reply with quote

good for you, barb - you really have to be your own advocate when it comes to your health - glad you found a kindred spirit, and it sounds like you are, too. good luck with the rheumatologist. Smile
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kevin

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Barbara K.



Quit Date:
December 23, 2004

Posts: 5977

PostPosted: January 10, 2008 12:55 AM    Post subject: Reply with quote

Barb,

You are strong. I was once told I may end up in a wheelchair many years ago but I'm going to try to prove that theroy wrong. I will pray for your doctor's to be able to help you.
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Obstacles don't have to stop you. If you run into a wall, don't turn arouind and give up. Figure out how to climb it, go through it, or work around it.

Blessings,
Barbara K.
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Cowgirl UP!



Quit Date:
July 26, 2004

Posts: 5029
Location: Ala

PostPosted: January 10, 2008 8:14 PM    Post subject: Reply with quote

Hey, what did you find out Barb???? Have any of your doctors talked to each other to see if they could come up with a solution?
Kay
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machias



Quit Date:
September 17, 2007

Posts: 94
Location: Florida

PostPosted: January 12, 2008 9:17 PM    Post subject: just shoot me!! Reply with quote

Well for 3 months I have taken my Zetia and stayed clear of anything with cholestrol-ate Soybeans like candy. So the doctor called me yesterday to give me my blood results. In July (when I got so sick from the stains) my bad cholestrol level was 188 -but I was NOT taking any cholestrol medicine. So my new bad cholestrol level (DRUM ROLL PLEASE)

218 Crying or Very sad

what is wrong with this picture-I give up. They can't put me on Satins--as clearly I am still dealing with that disaster. So the doc suggested I take 4-8 GRAMS of fish oil. So when you hear the news headlines of the old women who turned into a fish- Confused -that is me!!!!

She also suggested coming back in for more tests as in addition to the Stains messing up my COQ10 levels (possibly causing the Syogren's) they may have disrupted my liver from being able to process Vitimin D.
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