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Ana P

Scleroderma and Gastrointestinal Problems

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I’ve had 2 ANA test come out positive for centromere pattern associated with limited systemic sclerosis. My problems are mainly gastrointestinal. Bloating, gases, slow digestion and abdominal pain. I feel pressure inside my stomach and abdomen. I also feel stiffness in neck and back. Rheumatologist has not diagnosed me due to no CREST signs. Never have seen signs of Raynaud's. I am very concerned.

 

I know this disease can manifest itself differently in people. Can anyone who is suffering from this condition and is having gastrointestinal issues give me some insight regarding symptoms?

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Hi Ana,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with unpleasant gastrointestinal symptoms and although they can be a fairly common symptom of scleroderma, they can equally be symptomatic of many other health issues as well.  I can understand that you're feeling concerned about your blood test results; although they do have some relevance in the diagnosis of scleroderma, they are only a very small part. This is because it is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease, which is possibly why your rheumatologist is reluctant to diagnose you at this stage. Unfortunately, the nature of scleroderma is such that it makes diagnosing the disease very difficult  (I believe the average time it takes for a sufferer to be diagnosed is six years) so you are certainly not alone in not receiving a quick or complete diagnosis.

 

I've included a link to our medical page on Gastrointestinal Involvement, which I hope you'll find helpful and informative.  We do recommend that our members consult a listed scleroderma expert;  as many rheumatologists may only see a couple of cases of scleroderma in their lifetime, it does require specialist knowledge and expertise in order to deal with all it's little foibles and idiosyncrasies.

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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I have been having many GI issues due to Scleroderma.

 

I was diagnosed with GI issues in 2006 for severe GERD and resulting pulmonary issues. It destroyed complete elasticity in my esophagus. I went through partial fundoplication in 2008, by about 2014, surgery had failed (This surgery does not provide permanent relief). Now, it cannot be repeated as it is very complicated surgery having major risk of going on feeder tube.

 

Now, I am under treatment of several doctors as Scleroderma has severe impact on esophagus, vocal cord, lungs, stomach, small intestines, bladder, etc according to my doctors. I am ended up in disability and approved for SSDI. My one of the major issue is Neuropathy pain, I am in daily pain in 7-9 range out of 10. I have no external issues such skin tightening, ulcers, etc, but my all issues are internal according to my Rheumatologist and there is no treatment for it. 


Kind regards,

 

Kamlesh

 

 

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Hi Ana,

 

My son started out with all + blood work and no external symptoms, only internal.  His diagnosis is UCTD (Undifferentiated connective tissue disease) and he was placed on Plaquenil six months after initial symptoms, which soften his esophagus enough to work again.  Currently, the doctor says his esophagus looks like a silly, curly straw; contorted from the hardening.  Like Kamlesh, his esophagus, vocal cords, and diaphragm were affected, along with severe fatigue and depression.  The same autoimmune issues that attack your body can also affect the chemical balance in your brain. Gareth was diagnosis'd  over 11 years ago and is doing fairly well.  He does have the Sjorgren's now, and although he doesn't have the Raynauld's diagnosis, his hands and feet will sometimes blanch out totally white.  We deal with each issue as it comes up and he sees a Rheumatologist every 6 months and a Cardiac and Gastric doctor as needed, usually once a year.  When he was first diagnosis'd, I thought he would die within 5 years, from all that I read about scleroderma, but he's doing okay.

 

Take care, everyone.

Margaret

Mom to Gareth,  DS/ASD

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Thank you Margaret and Kamlesh. It saddens me to hear of the struggles so many of you are going through with this disease.  I really admire all of you.  Right now I feel in limbo.  I have no diagnosis, yet I feel terrible.  Eating is a source of anxiety .  I’m scared of what the future will bring.  I fear not being able to work again and not having health insurance.  I am depressed too.  I am going to a third rheumatologist this upcoming week.  I’m trying to see a scleroderma specialist, and have faxed my records, but I’m not even sure if they will take me. So far I haven’t received a response.  Many  blessings to you. 

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Kamlesh, it has to be so difficult to suffer from neuropathy on a daily basis. I’m so sorry you have to go through this. 

 

I don’t have pain, but my legs feel heavy and numb. Sometimes I get a vague tingly feeling in the ankles and knees. Have you experienced this?  You also stated that your problems are internal.  It seems that the two rheumatologist I’ve been to are looking for CREST signs.  I only have the esophageal issues and gastroparesis plus centromere antibodies, but this seems not to be sufficient for a diagnosis. If you don’t mind me asking, what criteria did they use to diagnose you?  Do you have sine scleroderma?  I’ve asked about it and the doctors have dismissed by telling me it is extremely rare. Did you see a scleroderma specialist?  

 

Sorry for all the questions. I’m just trying to look for guidance on how to proceed with doctors.

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I thought that Scleroderma was causing a lot of my digestive problems, but when I stopped using the anti depressants they were giving me for my "imaginary symptoms" before they eventually diagnosed Scleroderma, a lot of them improved.

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Dimarzio, glad to hear that your digestive problems have improved.  I understand completely. I feel that people think I need psychiatric help.  I must admit that now I am anxious and perhaps some sort of therapy might help, but my symptoms are real and not made up.  I am not a hypochondriac and I don’t get a kick out of going from doctor to doctor.  Actually going to the doctor is something I have never enjoyed. People including doctors don’t seem to understand.  May your other symptoms improve too.  Best of luck!

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Hi Ana.

 

Just being on a low dose or 1/2 dose of an anti-depressant will help with the anxiety and the *not knowing*.  You don't have to see a Psychiatrist, per se, even your local primary care physician could try a med on you.  If you feel it's not helping, then you can try another med or go off  them.  One thing I have learned over the years, because of Gareth,  is that there are a lot of anti-depressant drugs for the simple reason that each is tweaked to help the chemicals in the brain.  Gareth went into depression after initial diagnosis and the psych doctor said it is normal with any autoimmune disease; your brain is part of your body!  It's the *what if* that people get consumed with thinking about and that's not a good scenario to play over and over and over again in your mind.  You can go off anti-depressants just as easily as you can try them if you don't feel they are helping.

 

Take care, everyone,

Margaret

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