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1982

Should I be concerned?

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Hello,

 

I am new here and wondered if I could get some feedback regarding my situation. Eight years ago I started having chronic water diarrhea with gas and bloating. I was diagnosed with microscopic colitis and was told then it was idiopathic. My bowel issues are a constant problem.

 

I have also dealt with fatigue, occasional intermittent neuropathy as well as cold hands and feet. 

 

I saw my dermatologist for thinning hair on my scalp. She ran an ANA with reflex. Titer 1:640, postive centromeres, and centromere QN 5. My primary doctor doesn't think much of it and rheumatology refuses to consult. 

 

At this point I feel frustrated with medical doctors. Why won't they instruct patients how to prevent or treat symptoms early? It seems no one wants to help until the disease rears it's ugly head! 

 

Anywhoo, is it possible that my microscopic colitis is caused by Scleroderma? Could I possibly have sine Scleroderma since I currently have no cutaneous involvement?

 

Any help would be appreciated. Thank you!

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Hi 1982,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with unpleasant symptoms; however, all the symptoms you describe including the microscopic colitis (which could possibly relate to scleroderma) can equally be present in any number of other health problems. One of the main problems in obtaining a scleroderma diagnosis, is that the disease is incredibly complex and affects all sufferers differently and the symptoms can also wax and wane. I'm afraid this can be a pattern with many autoimmune diseases. I realise how worrying and frustrating this can be and I'm afraid that very often the rheumatologist does recommend a policy of wait and see, until further symptoms manifest themselves or not, as the case may be. Please understand that I have no medical training, apart from a now out of date first aid certificate, but I would reiterate the advice we always give about blood tests; although they help in the diagnostic process, they are by no means the be all and end all of a diagnosis and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify.

 

As scleroderma is so rare and complex most primary doctors seldom see cases of it and so therefore we do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi 1982,

 

Welcome to Sclero Forums.  I'm sorry you're dealing with symptoms and having trouble getting them sorted out.

 

I may be wrong, I often am, but it seems to me that a rheumatology consult would be a reasonable request, with positive antibodies and a collection of symptoms over the course of years. I mean, someone should take a look at it, you'd think, to see whether an autoimmune process is going on. 

 

Anticentromere antibodies can also occur in lupus, and that could also explain no skin involvement or other overt scleroderma symptoms (like pulmonary fibrosis). Focusing on scleroderma so early in the game could be detrimental and might be what you're up against right now.  Or, they might be figuring there's nothing going on that would require special treatment, even if you did have this that or the other underlying condition.

 

For a path forward, it looks to me like your only option is to change primary care providers. If possible, you might want to see if you can establish primary care with a board certified internist who has a solid background.  Like, try to find the one in your area with the most experience.  The problem is, primary care doctors are accustomed to dealing with the usual issues.  And, it's possible you might have an autoimmune issue. Internists are more geared towards dealing with complex and chronic illnesses; and would more likely be a rheumatology referral resource for you.

 

One of my surgeons insists that everyone should go to a new primary care doctor each year, just a matter of course, simply because: fresh set of eyes.  Of course, if your doctor is terrific and you know your care is top of the line and you have no unresolved health issues, then stick with what you've got.

 

But how could you possibly be content, having health issues that should by all rights be reviewed thoughtfully in light of positive antibodies.  Sure, it might still take ages for accurate diagnosis as some things just develop slowly -- but still, wouldn't you feel better if your case had a bit more thorough review?

 

:hug-group:

 

 


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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