1. < Autoimmune Diseases

Systemic sclerosis

Posted by teritrahan @teritrahan, Dec 26, 2022

My husband is extremely ill. He has been sick for 3 years and recently diagnosed with Systemic Sclerosis. He has raynauds syndrome, Chronic pancreatitus, liver cirrhosis, Adrenal disease, kidney disease,...the worst is his digestive system is causing more pain than he can tolerate. He has lost 60 pounds this past year. He also has lung nodules that come and go. He continues to suffer from debilitating upper abdominal pain after he eats thar lasts for hours and no dr. In Houston can figure out the real cause. We go Tuesday for G-poem procedure but his stomach emptying test was MILD. I doubt this is the cause of his pain. We have ran so many tests but they are missing something PLEASE HELP

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teritrahan | @teritrahan | Dec 26, 2022

Systemic sclerosis..I just posted about my husband Ricky. Im just wondering if anyone has experienced the same upper abdominal pain after about 15 minutes after he eats. The gastroenterologist does not believe it is the chronic pancreatitus. Ricky takes enzymes with every meal but doesn't help the extreme pain , he has a low fecal of 37. But the pancreas looks good. Some atrophic signs but not much. Ricky never drinks alcohol of any kind. This is related to Systemic Sclerosis. Can anyone help

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rpatel91 | @rpatel91 | Jan 30, 2023

I have been going to rheumatology for past three years now and doing blood test every six months and getting all the time anti centromere ( value 376.2) and ANA titer at 1:320. But my rheumatology said that you don’t have scleroderma. Because I don’t meet symptoms criteria yet. Because I don’t have any symptoms. My primary had ran those tests 3 years ago not in reference of any confused symptoms, I just had lumps in the throat feeling. I need opinions that I am going to have limited or diffuse system sclerosis? Thanks if anyone can answer it.

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3 replies
annewoodmayo | @annewoodmayo | Jan 30, 2023
In reply to @rpatel91 "I have been going to rheumatology for past three years now and doing blood test every..." + (show)
@rpatel91

I have been going to rheumatology for past three years now and doing blood test every six months and getting all the time anti centromere ( value 376.2) and ANA titer at 1:320. But my rheumatology said that you don’t have scleroderma. Because I don’t meet symptoms criteria yet. Because I don’t have any symptoms. My primary had ran those tests 3 years ago not in reference of any confused symptoms, I just had lumps in the throat feeling. I need opinions that I am going to have limited or diffuse system sclerosis? Thanks if anyone can answer it.

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Sorry I don't have information, but I wanted to send out good wishes to you.
I spent years examining my face for initial markers of scleroderma.

I tested positive for the scleroderma 70 antibody test THREE times! but, when I finally was able to get the expensive test (ELISHA, it might be called) after 5 years, it came back negative. I was told that this expensive test was definitive. I definitely do not have scleroderma. I've got plenty of other stuff to keep me busy, sadly. Do you know if this test has been done on you?

Wishing you peace...and good information.

REPLY
rpatel91 | @rpatel91 | Jan 30, 2023
In reply to @rpatel91 "I have been going to rheumatology for past three years now and doing blood test every..." + (show)
@rpatel91

I have been going to rheumatology for past three years now and doing blood test every six months and getting all the time anti centromere ( value 376.2) and ANA titer at 1:320. But my rheumatology said that you don’t have scleroderma. Because I don’t meet symptoms criteria yet. Because I don’t have any symptoms. My primary had ran those tests 3 years ago not in reference of any confused symptoms, I just had lumps in the throat feeling. I need opinions that I am going to have limited or diffuse system sclerosis? Thanks if anyone can answer it.

Jump to this post

Thank you so much for informative reply. No they haven’t done that but it has been elevated . In all blood test reports.

REPLY
Amanda Roe | @amandajro | Feb 2, 2023
In reply to @rpatel91 "I have been going to rheumatology for past three years now and doing blood test every..." + (show)
@rpatel91

I have been going to rheumatology for past three years now and doing blood test every six months and getting all the time anti centromere ( value 376.2) and ANA titer at 1:320. But my rheumatology said that you don’t have scleroderma. Because I don’t meet symptoms criteria yet. Because I don’t have any symptoms. My primary had ran those tests 3 years ago not in reference of any confused symptoms, I just had lumps in the throat feeling. I need opinions that I am going to have limited or diffuse system sclerosis? Thanks if anyone can answer it.

Jump to this post

Hello @rpatel91 and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on SS, which you can find here:
- Systemic sclerosis: https://connect.mayoclinic.org/discussion/systemic-sclerosis/

I wanted to include a link to some additional information as it is defined at Mayo Clinic to see if you feel this aligns with your symptoms and/or experience so far:
Scleroderma - Symptoms and causes: https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952

Aside from the lump in your throat feeling, do you have any additional symptoms?

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