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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Chopper

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Posted 14 July 2011 - 01:17 PM

Hello!

My thyroid level is now down within normal range as well as Vitamin D level. I would imagine I can attribute my increased level of energy, better sleep, and no more random muscle pains to that! Yay!

The young rheumatologist that I recently saw (my first visit since the initial visit and positive bloodwork 3 months ago), was at a lupus center and she will be moving to a scleroderma center in Pittsburgh under Dr. Medsger who I understand is a guru on sclero but will be retiring soon. She invited me to follow her and of course I said yes! Telangiectasias around mouth/face were noted, Raynaud's noted, a couple of puckering fingertips were noted. GI troubles noted. I asked if she thought my gastroparesis was connected to sclero. She said she didn't know. I'll ask that again when I see her with Dr. Medsger.

Just saw the GI doctor. I had lost a couple more pounds in last 3 months and experimented going without EryPed200 for my gastroparesis a couple times, only to prove it helps me and I want to continue taking it, especially since I see it worsening. I asked him about the timeline of my GI trouble: 1 1/2 years of gallbladder pain, onset of gastroparesis and gastritis as gallbladder worsened, constipation, and gastroparesis worsening since it's onset last summer. Did he think it could be connected to sclero? He doesn't think so since I don't seem to have esophageal involvement. This still puzzles me. The gallbladder is gone, didn't need much pain meds for it, I'm gluten free, I'm on omeprazole, why would the gastroparesis worsen for no reason?

Oh well. At least I'm feeling well and managing it.

Well wishes to all!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Sheryl

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Posted 14 July 2011 - 01:54 PM

Chopper, my gastroparesis now comes and goes in different intervals. Sometimes I get about 7 months without a major issue. My scleroderma diagnosis was made while on the surgical table preparing for a colonoscopy. My GI doctor is the one that informed me that colon and esophageal issues are a major part of scleroderma. I am glad to hear that your thyroid levels are in their proper ranges. You can have all kinds of problems when your thyroid gets out sync.
Strength and Warmth,
Sheryl

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#3 debonair susie

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Posted 15 July 2011 - 10:55 AM

Hi chopper,

:sorry: I'm hoping they are able to figure this out for you and treat you appropriately.

I am glad to read that you are feeling pretty okay, in spite of what is going on.

With your perseverence, I'm guessing they will stay on this.
Special Hugs,

Susie Kraft
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#4 Shelley Ensz

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Posted 15 July 2011 - 06:24 PM

Hi Chopper,

I'm glad you have at least a few things sorted out and are feeling a bit better now. I don't have any answers, but I do have lots of warm hugs to send you, okay?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Snowbird

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Posted 16 July 2011 - 08:00 AM

Hi Chopper

Glad to hear that through all that you are feeling better and managing somewhat better, that's at least good news in itself!
Sending good wishes your way!