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kellster631

Questions about Diagnosing Scleroderma

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Hi all, 

 

I'm new to this forum.

 

I'm a 25 year old male currently in a graduate program in NY. For the past several years I've had cold sweaty/clammy extremities (e.g., feet, hands, nose, knees), with blotchy discoloration. This is rather persistent, and I never really questioned it.

 

A few winters ago, I noticed my hands looked red and irritated (with raised bumps, mildly itchy). I was initially told I had a skin reaction, but after the same thing happened the following winter, my primary care physician assumed it was Raynaud's Phenomenon (RP) . About a month ago, I noticed the same kind of blotchy bumps and went to see my primary care physician, once again, who said it was RP. Out of expressed concern, they ordered an ANA (IFA) test for me. It came back negative, however before I got this result, I booked a follow up with a rheumatologist.

 

When I went in, I gave her my description of my hands in the cold: I have rather persistent discoloration: red hands, without CLEAR cutoff/pallor or phasic shifting. I do however have pretty persistent blanching in all of the area that I previously mentioned that extend to my whole hands (not only fingers), knees and feet, with sluggish blood return. I must say again I've never really had "episodic" reactions to cold, just persistent (possibly acrocyanosis). After discussing the discoloration, I also told her that the nailfolds on my hands are regularly red. She looked at them through a magnifying glass and concluded they were dilated, but no dropouts. Not sure if this could manifest with general poor circulation/acrocyanosis? Because of the nailfolds she ordered several other tests and an ENA:

 

kidney functioning through urine analysis 

C4 & C3

Sedimentation

CRP, 

SS-A

SS-B

SM

RNP

SCL-70 

JOL

 

All came back negative/normal except for a

SLIGHTLY lower C3 (88mgdl) in normal range of 90-180 Mg/dl

and a C4 at 15 in normal range of 10-40 (technically normal range, but seems on low end) 

 

Just curious if there are any other blood tests that were missed that may eludicate the conditions of my hands. Again, I don't have any "frank" pain or really specific issues besides cold blotchy hands & reddened nail cuticles. My skin, as a matter of fact, has always been rather elastic, however, "I noticed" that the index finger on my left hand feels a little different than the index finger on my right (non-dominant hand) could just be difference in skin by nondominant-dominant?

 

Obviously, I'm extremely anxious about my health and suffer from rather debilitating Hypochondriasis from time to time, so I'm very sorry for this tirade and if I'm being in any way insensitive. I'm just curious if there are any other things I can do to figure out whats going on with my hands.

 

I'm also curious if my chronic anxiety (that I've had since I was 8) has something to do with sympathetic NS issues that may be causing this..

 

Thank you for your time. 

 

-Kellen 

 

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Hi Kellen,

 

Welcome to these forums!

 

Please note that apart from a now out of date first aid certificate and a fondness for telling my medical team how to do their job, I have no medical training. Whereas I can understand that you may be feeling concerned about the discolouration on your hands, fingers and other extremities, these symptoms can relate to any number of health conditions, not only Raynaud's and scleroderma. As your rheumatologist has taken blood tests, which appear to have been negative, then she is really the best person to advise you further about them and also whether you should undergo any further tests. I would point out that scleroderma is a rare and complex disease, which cannot be correctly diagnosed by casually putting a few symptoms into an internet search engine.

 

Far more worrying is your anxiety about your health; one thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune or any other diseases. I understand that as your anxiety problems are making things difficult for you, perhaps you should think about dealing with that as a priority and so it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.

 

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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