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Biomarker for Diffuse Scleroderma skin has been discovered!


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G's colonoscopy


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#1 Margaret

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Posted 28 December 2009 - 12:46 PM

Hi, Everyone ,

Gareth did really well with the prep yesterday for his colonoscopy this morning. The doctor found several rectal ulcers and did biopsies on them. It will take a week to get the pathology report back. I guess they have to rule out Crohn's or some other bowel disorder. I couldn't find anything in the Sclero medical reports about ulcers but I will keep you all posted when the pathology report comes back.

Take care, Everyone.
Margaret

#2 Sheryl

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Posted 29 December 2009 - 03:21 AM

Thanks Margaret on keeping us informed on Gareth. I am so happy he was able to survive the not eating portion of the test. That is always the hardest part for me. When I know ahead of time that I am going to have have certain tests then I plan them for very early in the morning. If I don't have that option because the test needs to be done right away then I usually stay up half the night eating my morning meals. Then I don't eat the required hours prior to testing, because I am sleeping until right before going in for the test. I don't think I could be up half the day waiting for a test and not eating or drinking something. It seems like I eat/drink something about once an hour. I guess that is in part from having diabetes on top of everything else. Do keep us informed on what the results showed. Hopefully, Gareth won't have to have any further testing done.
Strength and Warmth,
Sheryl

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#3 Snowbird

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Posted 29 December 2009 - 01:02 PM

Hi Margaret

Keep us posted....I always hated the 'drinking of the so called lemon and/or flavoured drinks' required for the test...yuk :barf: !! Hoping for good luck with his results.
Sending good wishes your way!

#4 debonair susie

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Posted 29 December 2009 - 02:43 PM

Hi Margaret,

I'm so glad Gareth got through everything as well as he did.

Not long ago, I had a colonoscopy/upper endoscopy. It was time for them and was glad to get them done all at once.
I wasn't fussy about the prep, but I really like Sheryl's idea of sleeping up to just before the test!
I would never (again), have them done as late as I did...3:00PM! That was not even nice, wating that long!

Thank you so much for keeping us posted, Margaret!
Special Hugs,

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#5 smac0719

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Posted 03 January 2010 - 10:54 AM

Hello Margaret. Glad to hear things went well with Gareth's test.
I may have Scleroderma, but Scleroderma doesn't have me!

#6 Margaret

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Posted 06 January 2010 - 03:03 AM

Hi, Everyone ,

I got an interesting phone call from Gareth's gastro doctor the other night. He read the biopsy report, and then, stated that he felt the diagnosis was wrong. The tissue around the rectal ulcers didn't show Chrohn's, IBS, etc. It showed foamy histiocytes that were PAS positive - such findings are seen in Whipple's disease. WHAT is Whipple's disease?!?!? I spent the rest of the evening researching on line and tend to agree with him.....Gareth doesn't show the majority of the symptoms EXCEPT the neurological ones, which could be the autism or early AD, too, which his neurologist *thinks* he has. In hindsight though, he has gone downhill so badly, neurologically, since our trip to Puerto Rico in May. This kid is sooooooooooo confusing!!! I told the gastro doctor that no one expected the diagnosis of sine-Scleroderma/UCTD when he was 18 years old, either, and that he should keep an open mind!!! The only thing I can think of was (if it is Whipple's) that he got it in Puerto Rico this past May - maybe from snorkling. Who knows?!?!?

Take care, Everyone.
Margaret

#7 Jeannie McClelland

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Posted 06 January 2010 - 05:14 AM

Good grief, Margaret, Whipple's Disease?? I had to look it up too. What's the next step? Is his doctor going to try treating Gareth with antibiotics?

Warm hugs to you both,
Jeannie McClelland
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#8 Sheryl

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Posted 06 January 2010 - 02:08 PM

Margaret, I am so sorry to hear of more bad news for Gareth. Sometimes life just doesn't seem fair does it. I sure hope there is something that he can be given that will help with most of his symptoms. I feel so bad for you and your family. Please keep us informed on what can or is being done to help Gareth be more comfortable.
Strength and Warmth,
Sheryl

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