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Very confused by diagnosis with total lack of advice

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#1 Eoinok



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Posted 10 December 2014 - 01:33 AM



I'll try to summarize my situation briefly. I went to a dermatologist because hard patches of skin had appeared on my forehead. I had a blood test and received a positive result for ANA. I took this as basically a death sentence. However, another doctor recommended another blood test, saying the earlier results showed only slightly elevated levels and could be a false positive. I also had an x-ray of my chest for lesions. Both the blood and the x-ray showed nothing to worry about.


But at the same time the doctor said the skin issue almost certainly was scleroderma. That was a few months ago and the hard skin on my forehead has definitely gotten worse. not drastically worse, but worse. And despite following a very healthy diet, where I've cut everything other simple meat and vegetables, and a little fruit, I'm having gastrointestinal and bowel issues. Nothing really terrible, but the feeling of my stomach being not quite up to the task is fairly persistent.


On the other hand, I feel quite strong and healthy most of time, as far as physical exercise is concerned. 


What I can't get my head around is the disparity between the seriousness of scleroderma as I read about it online, and the total absence of any treatment or advice from my doctors. They've basically said just wait and see if it gets worse. 


Can anyone recommend anything, anything at all, that I should be doing? And how worried should I be?


Any help or advice will be appreciated.



#2 judyt


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Posted 10 December 2014 - 09:45 AM

Hi Eoin,


First of all, a warm welcome from me.   You have come to an excellent place for support and information so we hope you keep posting.   Secondly, we don't want you to worry.   Be aware of your situation and educate yourself as well as you can but please don't panic.


Scleroderma is not a one way ticket to the funeral parlour as those of us here can testify.   I myself had my first symptoms as a pre-teen and this year I celebrated my 70th birthday, next year will be our Golden Wedding celebration.   It is possible to live a long and satisfying life and keep your family together too.


The next most important thing for you to do is to find a Scleroderma Expert Rheumatologist within reach of your home and get a referral to that practitioner as soon as you can.   You have given us no indication of where in the world you live but if you research the information on this site you will find a list of suitable Rheumatologists throughout the world.   I am totally hopeless at adding links to these posts but I am sure somebody more savvy will pop along soon and make it easier for you.


In the meantime, best wishes to you from the upside down side of the world,


#3 Joelf


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Posted 10 December 2014 - 11:04 AM

Hi Eoinok,


Welcome to these forums!


As Judy has stated, should you be diagnosed with Scleroderma, it's certainly not the end of the world; many of our members have had this disease for a number of years and are still going strong. I was diagnosed five years ago and intend to be around for a good long time yet, if only to get my money's worth from my pension! ;) The very nature of Scleroderma means that it affects everyone differently; some unfortunately suffer many debilitating symptoms whilst others find that their life can carry on almost the same, with barely a blip.


Sometimes it can be a 'wait and see' policy for treatment, although obviously if there are major organs affected then more aggressive treatment is required, which is why we do recommend that our members, if possible, consult a Scleroderma expert, in order that they receive specialist knowledge from someone who understands all the little idiosyncrasies of this bizarre disease.


In the meantime, do browse through our Medical Pages, where you'll find accurate, up to date information about every aspect of the disease.


Kind regards,

Jo Frowde
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#4 Eoinok



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Posted 10 December 2014 - 12:21 PM

Thank you for the kind and helpful replies. I've looked through the medical pages and my symptoms match en coup de sabre exactly. That's more information than my doctors gave me.


As for my location: I'm Irish but I live in South Korea. I've contacted the Irish Scleroderma and Raynaud's association and they've been very helpful, but they haven't been able to find an expert in this country. I've seen dermatologists and rheumatologists, but no specific scleroderma specialists. 

#5 Amanda Thorpe

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Posted 12 December 2014 - 02:55 PM

Hello Eoinok


From your other posts you have been diagnosed with en coup de sabre, a type of localised scleroderma. As it happens "A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular (affecting the bones and joints), neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up." It's possible to have localised scleroderma and a symptom or two of systemic scleroderma but at least your life expectancy isn't affected!


Take care.

Amanda Thorpe
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