fcarpio

I have scleroderma.

9 posts in this topic

Recently I found out that I have Scleroderma. It is the systemic type and so far I have no symptoms. I don't know what to make of it.

 

FC

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Hi,

 

You say you have Systemic Sclerosis with no symptoms, how then, can you be so sure you do have SS.   A positive blood test result alone does not indicate active disease .

 

If you look through the forums and medical pages on this site you will find that symptoms are the main way of confirming a diagnosis and there are several folks here who have negative bloods but very obvious symptoms.   If you have no symptoms now then there is every likelihood that you will never develop full blown SS.

 

Best wishes

Judyt

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Hi Fcarpio,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently found out you're suffering with Scleroderma, which must be very worrying for you, but I am a little confused as to how your doctor/rheumatologist arrived at the diagnosis, as you don't appear to have any symptoms. Scleroderma is such a complex disease and as Judy has suggested, the results of blood tests alone are not normally conclusive as a complete picture would be needed, which includes clinical symptoms, to enable a diagnosis to be made. 

 

I've included a link to our medical page on Common Medical Tests for Scleroderma which I hope will give you some more information and you will see from the link that the diagnosis is by no means straightforward. We also have a lot more information on our Medical pages.

 

Kind regards,


Jo Frowde

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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Yeah, I do not feel different but my doctor found high levels of protein in my urine and very low levels of vitamin D. Further tests discovered that my kidneys are starting to get affected. I also failed the base of the nail test where the blood vessles are changing to look like someone with Scleroderma. They have put me on vitamin D and meds for high blood pressure.

 

Honestly, even though I am doing some reading I remain somewhat ignorant about the disease. Too many variables and too many unknowns. Side effects of the medicine get confused with symptoms of the disease.

 

At this point more than anything it is nerve wracking (but only when I think about it). I still do not understand the gravity of my/our situation.

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Hi Fcarpio,

 

I assume that the test to which you refer is Nailfold Capillaroscopy and to quote from our medical page on the subject "Some people with positive ANA and Raynaud's never go on to develop a defined connective tissue disease (CTD)." Please note I have no medical training (apart from a now out of date first aid certificate) however, recent studies have demonstrated that individuals with low blood levels of vitamin D are at a higher risk of developing autoimmune diseases, which is presumably why your doctor has prescribed it. I've included a link to our medical page on Vitamin D Deficiency, Sunshine and Scleroderma regarding this and also a link to Scleroderma Renal (Kidney) Involvement to give you some more light reading. ;)

 

We do recommend that, if possible, our members consult a Scleroderma expert as this perplexing disease does require specialised knowledge.

 

I can understand how very confusing and worried you must be feeling; as we said previously, Scleroderma is a very complex disease and the diagnosis is not simple. However, because the disease is so diverse and affects everyone differently, a diagnosis of Scleroderma is not necessarily the end of life as we know it; for example, I have systemic Scleroderma with lung involvement, but my quality of life (and hopefully life expectancy) is still pretty good and fulfilling.  I realise others have not been so fortunate and obviously I can't predict the future (sadly! ;))  and reassure you that the disease won't progress, but it's possible that you may never go on to develop the full blown disease and hopefully your condition will not deteriorate any further.

 

Kind regards,


Jo Frowde

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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Thank you Joelf. I think I am past the scared phase. Now I am in the phase where I man up and do my due diligence. I am going to find out EXACTLY where I stand with this thing.

 

Take care,

 

FC

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Hi FC,

 

Welcome to Sclero Forums!  I'm glad that you've joined us. And I am hoping you can see a scleroderma expert soon, who could help shed more light on the subject.

 

Meanwhile, sit yourself down and make yourself right at home here!

 

:emoticons-group-hug:


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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Hi FC,

 

Yes, there are a lot of variables and it is nerve-racking!

 

I hope this forum helps you as much as it helps me. In the beginning it reassured me that so many lived for so many years with the disease because reading the internet can make it sound like a death sentence. I have had diffuse scleroderma for 10 years now, with renal failure, a kidney transplant, lung fibrosis and pulmonary hypertension. I use oxygen for exertion and am applying for a lung transplant.

 

The people here have kept my spirits up and have inspired me along  my journey. They have taught me how to laugh at adversity and, as you said, man up. It is never easy and some days are harder than others. I make sure I do the things I love to do which includes art, traveling, and going to the beach. I can't do them in the same way I used to but have found ways to adapt.

 

:emoticon-hug: Here's a hug for you. Stay in touch.

 

miocean


ISN Artist

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Hello Fcarpio

 

How's it going? Are you managing symptoms vs side effects?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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