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Biomarker for Diffuse Scleroderma skin has been discovered!


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Gastro Visit


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#1 Sandy B

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Posted 29 June 2010 - 07:28 PM

Hi all,

Had gastro visit yesterday, (follow up to barium swallow last month) The doctor says, xray show the finest example of a hide-bound bowel (radiological term apparently) that he had seen, which like he said is great for him and from a clinical diagnostic and teaching point of view, but not so great for me! He is going to try me out on some new meds for a month to see if that helps my gut problems and if not it is back to the antibiotics on a monthly basis. The good news is that my bloods show no active signs of inflammations at the moment, so very happy, dance around the room.

My shingles are easing, just have an area on my thigh which is still hyper sensitive to touch, but it is improving greatly.

Have an appointment next week to have my lungs assessed, still get episodes of shortness of breath and dizzy spells, walking upstairs, vacuuming etc etc.
Lung function tests last year showed my lung function was down, but no explanation has been given for this so far, hence the visit next week.

Apart from all this and I do feel reasonably healthy at the moment, haha.

Take care and have a good day where ever you are.

Sandy B

#2 Amanda Thorpe

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Posted 30 June 2010 - 08:16 AM

Hello Sandy

Hidebound...yikes! Gastro issues can really drag you down, I hope the new medication help your symptoms. Nice to be a study case eh? :emoticons-yes:

Take care and keep posting.

PS Happy dance about the lack of inflammation, saved me from cytoxan!
Amanda Thorpe
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#3 Jeannie McClelland

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Posted 01 July 2010 - 02:32 AM

:happy-day: on the no active inflammation. Still a little early here in the Rockies for me to do the happy dance, but I'll sneak one in later, OK?

Every single time I see one of the doctors, I get asked "How have you been? No colds, infections, etc.?" and I always say "No, I'm incredibly healthy, I never catch anything!" It's getting to be like a pantomime routine. The doctor gets to do the punch line of "Well, apart from the scleroderma." That's the cue for the general laugh and on to business.:lol:

Best wishes,
Jeannie McClelland
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#4 Amanda Thorpe

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Posted 01 July 2010 - 08:19 AM

Yeah count me in...I'm as healthy as a horse...tinned in dog meat! :lol:

I said to Ma the other day I never get colds etc since having sclero and couldn't figure out why. She pointed out it was because I don't interact with many people anymore being mainly a recluse! :lol:
Amanda Thorpe
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#5 Deb1million

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Posted 03 July 2010 - 10:05 AM

Hi SandyB,

I hope your shingles are completely gone very soon. And as for the gut and lung issues, are you on Cellcept or anything else for these? I hope your next appointment offers something to help your symptoms.

And, for what its worth, my opinion as to why we don't get colds is that the sneezing etc is the body's immune system response to the cold virus, and most of us with scleroderma are on immune suppressants, so the response mechanism is 'switched off', so our bodies just let the cold virus in the open front door. That's how my doctor described it to me. I've been on various immune suppressants since 1996, and like you ladies said earlier - we look really healthy!
:emoticon-hug: