Tbhof

Scared and need advice

28 posts in this topic

Tbhof,

 

A negative ANA is a great sign!!  Also, worrying can cause heartburn too  :sorry:

 

I cannot wait to hear what your rheumatologist says, I bet it will better news than you fear  :hug-bear:


Diffuse Scleroderma Diagnosed March 2009

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I should add the patches are also painful off and on. Not on my back. Just the ones on my palm

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Hello Tbhof

 

Sorry, should be more clear! By red flags I mean symptoms, have a look at our video of systemic scleroderma symptoms (including a leaflet). If you start collecting these then go directly to the doctor!

 

You may also want to have a look at our information about antibodies and scleroderma. The upshot is that blood tests should only be used to support a diagnosis of scleroderma and/or to help categorise the type, it should not be used in isolation to either diagnose or dismiss scleroderma.

 

From 2007 to 2014, my ANA and SCL-70 were negative, this year my ANA became positive BUT not the SCL-70, that remains negative. Why my antibody changed is anyone's guess but as you can see, antibodies themselves are not totally reliable! When it comes to achieving diagnosis is should be symptom lead with biopsy and blood tests being used to support it.

 

My morphea patched are totally painless, apart from those that have blistered as they feel bruised and sore. The tight skin that I have from the systemic scleroderma has lead to neuropathy and plenty of pain underneath it though!

 

Hope this helps and take care.


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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Hi Amanda. I'm guessing that is you in the video? :). Nice to meet you! Thanks for sending me that link. When people refer to "tight" skin, is that skin that can't be pinched? Is it the same as "thickened" skin?

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Hi Tbhof,

 

Yes, that is Amanda in our fabulous Scleroderma Video Series.  Tight skin occurs in stages, and the tightening can also go into remission, or even revert, at any stage.  The usual stages are swelling, thickening, and tightening. The last stage can contract the affected joints, causing them to permanently curl inward.

 

This is *not* the same as morphea scleroderma, which occurs in patches of generally oval discolored skin.  There is no color change to systemic scleroderma, where the skin involvement most commonly begins in the tips of fingers on both hands, and spreads upward.

 

Having a patch of morphea is *never* a symptom of systemic scleroderma, and morphea does not "progress" or "turn into" systemic scleroderma. Morphea is occasionally accompanied by one or two other symptoms, but the presence of those symptoms again does not indicate that systemic sclerosis is developing. People with morphea who are most at risk of also getting systemic are those who have the anticentromere antibody, and even then, it is only a risk factor but not a guarantee.

 

The statistical odds are actually 96% to 100% that a person with morphea would NOT ever get systemic, and although this is very low, it is still a bit higher risk than that of a normal, healthy person. Morphea does not lower a person's life expectancy in any way.  Many people have just one or two small patches that do not go deep and do not occur over joints. It will often fade or go away even without treatment after about three to five years. 

 

However, some cases of morphea are more aggressive, and the best approach is to stop the spread of morphea, particularly in more difficult cases. Here, UVA1 Phototherapy is now considered to be the first line treatment.  It is simple enough, like indoor tanning -- no shots or pills required!  Patients are regularly monitored for skin cancer, as they should be with any significant UV/sun exposure, and the main side effect is skin tanning.

 

: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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Thanks for the great info Shelley! When you say systemic doesn't cause discoloured skin, you mean the skin that gets tight and thickened looks "normal color" but tight? In Morphea, is brown a common Color? Or more likely purple? I've read so many different things. My patches are brown on palms, and brownish on my back. It's hard to get a good look as its on my spine.

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Hi Tbhof,

 

Yes, systemic scleroderma causes thickened, hardened, or tight skin in the affected areas but it does *not* cause discolored skin and it does not cause discolored skin in patches. Systemic also affects matching sides of the body at once, whereas morphea appears in patches anywhere.

 

In morphea the patches are typically oval and usually reddish or brownish, normally with a lighter colored center.  Systemic sclerosis does *not* have such color changes plus it typically begins in the fingers or toes and moves upward from there, on both sides.

 

Therefore morphea is not ever a symptom of systemic scleroderma, and only very rarely do both morphea and systemic occur together in the same person. Many people think that morphea must be a precursor to systemic but that is absolutely not true. There is no such thing as a natural progression from morphea to systemic.  The people who are at risk of acquiring both morphea and systemic have the anticentromere antibody, but that is merely a risk factor and not a guarantee of any sort.  See the resources on our main site for Morphea.

 

About 25% of people with morphea also have one or two other symptoms beside just skin involvement, but they have a perfectly normal life expectancy. If at any point you develop symptoms of systemic, such as the aforementioned type of tight skin or pulmonary fibrosis, then you are fairly likely to find you also have the anticentromere antibody. However, Amanda is a serious exception to that as well, having both morphea and systemic but no antibodies at all, until very recently.

 

Most unfortunately, many of us find that our bodies have failed to read the medical textbooks <sigh> but overall, there's a huge difference between localized and systemic scleroderma which I hope you find comforting and reassuring, as you learn more about the differences.

 

: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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Thanks again for taking the time to respond Shelley. I feel a bit better than a few weeks ago, but obviously still worried about what's all going on. They spots on my palms are on either side, but the few on my back are not symmetrical. The skin on my palms is thickened and more textured than my normal skin, but also more brown in color too. There is pain off and on, but thankfully it's been less recently. I hope that my appointment with the rheumatologist comes soon, to sort it out. Waiting is hard!! I feel like I'm a bit obsessed with looking at my hands watching for any changes.

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Hi Tbhof,

 

I may be wrong, I often am, and I am not a doctor and have no medical training at all.  As it happens, I've never heard of either localized or systemic scleroderma causing brown patches on the palms of both hands at once.  It's not that it couldn't happen, of course, just that I don't remember tripping across that particular description before, especially as an initial symptom.

 

However, there are other much more common things that could cause brown patches on both palms, such as some vitamin deficiencies, liver problems, palmar fasciitis, sun exposure (particularly in people with darker skin tones to begin with), fungal infections, and so forth. So I really hope your primary care doctor has thoroughly ruled all those items out already, And if your palmar lesions turn out to be caused by some form of scleroderma, it will certainly be very good for us to know about it.

 

Keep in mind that it's possible to have two different conditions at once, such as a palmar fungal infection plus morphea in other places. And who knows, they might all be liver spots (natural aging of skin).  Try your best to hang onto comforting thoughts or possibilities while you are waiting.  While waiting for doctor appointments or test results, I try to tell myself that it is "all good news".  For example, if you have scleroderma, that's great, at least you got diagnosed and now you can deal with it.  If you don't have scleroderma, that's great, you can deal with whatever it is.  So you see, it is all good news because finding out whatever it is, is a giant leap forward from where you are right now.

 

Really, the biggest challenge in any symptom or illness is in how we figure out how to cope with it emotionally, because how we talk to ourselves directly affects our emotions, and our emotions directly affect our happiness...or anxiety, as the case may be. So I find it helpful to use my bad memory to forget how I'm feeling, and to start giving myself more positive input.  Eventually, my negative emotions just throw up their hands and accept defeat, letting me lapse into happiness.

 

No matter what ailment you have, you deserve to be happy and you deserve to be happy today. There is no illness worth sacrificing our peace of mind or joy of life, except for the few moments it takes to study the situation, and reframe it.

 

Jolly lofty words of exhortation, eh?  Yes, I also wish I could live up to them and follow them more of the time, so don't be discouraged if the road seems bumpy for you. You'll make it and you'll be a stronger and better person for having struggled with the threatening unknown for a bit, and then you'll be able to provide comfort and guidance to others who follow in your merry and inspiring footsteps.

 

: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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Thank you for your caring response Shelley. If I could give you a hug, I would!  :happy:  I too haven't found much on patches on palms... Which only adds to my confusion. There's something weird going on that's for sure.... Just want to figure it out and what it means. Do you have limited sclero? How are YOU doing? Enough about me!

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"There's something weird going on..."

 

Truer words and all that Tbhof!

 

Well, even if you don't end up having scleroderma, your statement means you qualify for membership of this forum. For sure!

 

There's plenty weird here and I don't just mean disease!

 

Thanks, you really made me chuckle!


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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Hello Tbhof

 

I just remembered something, leading up to my diagnosis, I had long brown marks running from my wrists up my forearms ending just short of the elbow crease. The marks were on the underside of my forearms and looked a bit like an old bruise. They were painless.

 

This was followed by my wrist joints becoming fixed and then my hands and fingers became fixed, completely straight. This was because the skin, elbow down to fingertips, had hardened. Of course I didn't know that at the time.

 

I have atypical systemic scleroderma, my diseases didn't start with Raynaud's and fingertip involvement.

 

Hope this helps.


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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I'm glad I made you chuckle Amanda :-)  We can all use a good smile now and then. Of course I hope it's not scleroderma but I'll take the membership! My marks are brown and they are on my palms under my thumb area just above my wrist. They can be painful at times. I have no brown on my forearms but the undersides of my forearms get these weird creases in them when there's been pressure. Such as holding my baby. The skin doesn't feel different or look different there though. How quickly did the brown marks come for you? Was the texture different?

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