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Scared and need advice

morphea? systemic?

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#1 Tbhof

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Posted 06 September 2015 - 08:52 AM

Hi. I'm 31 years old. Two years ago I developed a hard patch on each palm just above the wrist. Also a couple purplish spots near my spine that looks like Morphea. I am awaiting an appointment with the rheumatologist but I am scared. I am a mom of 4 young boys. I recently started to have heartburn for the last 3 weeks as well. My ANA is negative as is my rheumatoid factor. I have no Raynaud's and no finger involvement or swelling.

 

Please give me your thoughts?



#2 Joelf

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Posted 07 September 2015 - 05:39 AM

Hi Tbhof,

 

Welcome to these forums!

 

I can understand your worries over your health symptoms, particularly with a young family to consider. Unfortunately, it's very hard to diagnose autoimmune diseases, as the symptoms can mimic many other problems and scleroderma diagnosis is particularly difficult.

 

Morphea is a type of localized scleroderma. It affects the skin and sometimes underlying muscles and joints, which can cause disability, but it is not life threatening. It isn't systemic, but having said that it is possible (although quite rare) to have Morphea alongside systemic Scleroderma (step forward, Amanda! :wink:) I have to say that although you have had blood tests which are negative, they really are not the be all and end all, as it's perfectly possible to have negative test results and yet develop Scleroderma and vice versa. It's therefore important that your rheumatologist is able to take into account all your symptoms in order to try and reach a correct diagnosis.

 

We have a medical page which includes a checklist of symptoms and also questions and information on preparing for your rheumatologists' appointment. We also have an excellent video series, produced by Amanda Thorpe, which are very helpful and informative.

 

Kind regards,


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#3 Tbhof

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Posted 07 September 2015 - 07:51 AM

Thank you for your reply. Can reflux be common in Morphea? I do have celiac disease. I don't know if that means anything with it all....

#4 Joelf

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Posted 07 September 2015 - 10:15 AM

Hi Tbhof,

 

Please note that apart from a fondness for telling my doctors how to do their jobs and a now out of date first aid certificate (handy, should I come across somebody with a broken leg etc. :wink: ) I have no actual medical training; however, generally speaking, reflux is not a usual symptom of Morphea, which tends to affect the skin.

 

To give you some more information, I've included a link to our medical page on Celiac Disease and Scleroderma which I hope you'll find helpful.

 

Kind regards,


Jo Frowde
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#5 Tbhof

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Posted 07 September 2015 - 11:39 AM

I had watched a YouTube video on scleroderma.  In it he said that if you didn't have finger involvement of any kind you most likely didn't have systemic. What are thoughts on that? Also I have read localized can also include other symptoms beyond skin?



#6 judyt

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Posted 07 September 2015 - 01:35 PM

Hi,

And welcome to the forum.

 

I don't know anything much about localised sclero but I have Systemic and my finger involvement is very minor but still there.   Sclerodactyly involves the skin between the first knuckle and the fingertip.   The skin is inclined to be shiny and tethered, which means there are no wrinkles in that area.   You will notice if you look at your hands there is loose skin that you can pick up and move.   In my case that doesn't happen between the knuckle and the fingertip, and that is what is meant by the term 'tethered'.  

 

Best wishes for a less extensive involvement

Judyt 



#7 Tbhof

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Posted 07 September 2015 - 02:03 PM

I don't seem to have any of the tightness in the fingers. I guess I'm hoping with all I have and hoping whatever is going on is localized.

I guess I'm hoping someone will say sounds like Morphea and reflux is common with that and don't worry! I know it isn't that simple.... I don't have any thickened skin in between the fingertips and first knuckle that I can tell. So hopefully that's a good sign. Worried sick though about everything.



#8 Joelf

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Posted 07 September 2015 - 07:48 PM

Hi Tbhof,

 

I do understand how worrying and frightening your symptoms can be and certainly the fear of the unknown is the worst of all. :i-care:   I can also relate very much to the feeling of wanting someone to say that everything will be alright, so that you can feel relieved and less anxious.

 

Unfortunately, it's not possible to allay your fears at this stage; also, because the nature of the disease, it affects everyone so differently and so the symptoms that you're experiencing could relate to any number of health problems. I have systemic Scleroderma, but very little skin thickening, although in the beginning my fingers were very swollen. However, I would say that constant worry and anxiety will definitely make any autoimmune problem worse and I'm afraid you will probably have to undergo some more tests to enable your rheumatologist to get a clearer picture and reach a hopefully correct diagnosis.

 

The only thing I would say is that if the very worst comes to the worst and you are eventually diagnosed with Scleroderma, it's not necessarily the end of life as you know it. I've been diagnosed for six years now and am still going strong!! (I fully intend to live to be 90 or more, in order to get my money's worth out of my pension!! :wink:)

 

Kind regards,


Jo Frowde
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#9 judyt

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Posted 07 September 2015 - 10:34 PM

Hi,

 

And I have had Sclero since 1966.

 

 It is only in the last 3 years that I have been slowed down to the extent that I have to have help with lots of things.   I can still enjoy life though, still drive the car and get myself around as long as I don't have to walk far.

 

Chin up and stay positive, worrying won't help and could even make things seem worse than they really are.

 

Judyt



#10 Shelley Ensz

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Posted 08 September 2015 - 08:58 AM

Hi Tbhof,

 

Welcome to Sclero Forums. I'm sorry you think you may have Morphea and send my best wishes to you.

 

There are several important things to keep in mind. One is, your spots might not be morphea. They could be many other things, including psoriasis, dermatitis or other things. I have systemic scleroderma, and when I developed a discolored patch, my doctor assumed it was morphea, even though it is very rare to have both morphea and systemic together.

 

Eventually I had the plaque biopsied, and it turned out to be deposits as the side effect of medication. I had been on two medications that can cause such spots, both plaquenil and minocycline (an antibiotic), so my plaques are completely harmless and no treatment is necessary for them.

 

I know this sounds horribly trite and may not be helpful at all.  But when I encounter worrisome things, I find any helpful phrase that may help reduce my anxiety and just repeat it to myself each time the worry pops up.  Things like, "It is what it is." Or, "Don't trouble trouble until trouble troubles you."  I even poke fun at myself with things like, "My favorite exercise is jumping....to conclusions!"

 

Morphea comes along with a perfectly normal life expectancy. It does *not* automatically progress to systemic scleroderma and in fact, the overlap is very rare, anywhere from zero to 4 percent of people with morphea also get systemic. Those most at risk have the anticentromere antibody (and even that is not a guarantee, just a risk factor).  It is entirely normal for people with morphea to have one or two symptoms outside of the skin plaques, such as heartburn.  Heartburn is also extremely common in the general population of entirely healthy people, and it is very easily treated, so it is  nothing dire and most of us find it to be very easily managed once we know we have it and observe what makes it worse and what relieves it.

 

Please keep in touch, and let us know how things go with your rheumatology appointment. We care, and hope that you are feeling better, and more comforted, soon.

 

: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.

#11 Tbhof

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Posted 08 September 2015 - 09:42 AM

Thank you ladies for your encouraging words. I mostly do okay and then my brain will get stuck on some of the terrible things I've read and I convince myself it must be what I have. I do feel it's some type of connective tissue issue and waiting for appointments is always so tough. I have 4 young boys the youngest is only 9 months and my thoughts go to them and how/if this could impact them. But I'm getting ahead of myself, aren't I? Fear is a horrible feeling! I will keep you posted. Would I just keep posting on this thread? Again thank you for your advice. You will each be added to my thoughts tonight .

#12 Joelf

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Posted 08 September 2015 - 07:30 PM

Hi Tbhof,

I'm glad that you're feeling a little more comforted.

Please do let us know how you get on with your rheumatologist's appointment; you can add to this thread, or start another if you would prefer.

Kind regards,

Jo Frowde
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#13 Amanda Thorpe

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Posted 12 September 2015 - 06:20 AM

Hello Tbhof

 

Welcome to the forums.

 

A 2003 large multinational study found that 25% of localized patients (includes morphea) had at least one other manifestation, such as osteoarticular, 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.

 

I happen to have both systemic and localised scleroderma but, as already said, that is pretty rare. I know lots of people with systemic scleroderma, a few with localised but I don't know any with both other than myself.

 

Sclerodactyly is a tapering deformity of the bones of the fingers, defined by tight, stretched, wax like, hardened skin on the fingers and hands, causing the fingers to curl inwards, frozen in a clawed position, the sclerodactyly hallmark. Underlying soft tissues can atrophy and depending on severity, sclerodactyly can cause disability. In scleroderma, sclerodactyly onsets with puffiness (swelling, edema) of the fingers or toes, and only rarely advances to the clawed condition described above. It is associated with systemic scleroderma not localised.

 

Perhaps you might find a way to extinguish all or most of your fear because it isn't doing a thing for you and so far, you don't have any actual red flags. Yes reflux can be a non skin manifestation of morphea but it can also be just one of those things millions of people have and let's face it, odds are in your favour that this it is most likely. Your patches could be anything, including morphea and if they are that, you'll be relieved when you consider that they're not one of the alternatives, such as systemic scleroderma.

 

And what if you did have morphea and/or went on to develop systemic scleroderma? Unlikely in the extreme but for the purposes of what I am saying...people still live very good, albeit very different lives, with systemic scleroderma. Remember, the only thing that is actually the end of the world is the end of the world. At this point in time you have too many things on your side to invest that much of your time and energy into worrying about something that may never happen and anyways, if it did happen it's not the end of the world!

 

Let us know what the rheumatologist says and take care.


Amanda Thorpe
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#14 Tbhof

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Posted 13 September 2015 - 06:06 AM

Thank you Amanda. I appreciate you taking time to give me some information and to give me advice and hope as well. I'm sorry that you have systemic and localized, but it's awesome you take time to encourage others. Helping others often comes because of something you are being brought through. Thank you for taking time to chat. Hope you are having a good day and feeling good. Blessings! I will definitely keep you posted. TBhof



#15 Tbhof

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Posted 13 September 2015 - 06:11 AM

Also..what would you consider "red flags" in scleroderma?

#16 Kathy D

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Posted 15 September 2015 - 09:13 AM

Tbhof,

 

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

 

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


Diffuse Scleroderma Diagnosed March 2009

#17 Tbhof

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Posted 16 September 2015 - 10:00 AM

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

#18 Amanda Thorpe

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Posted 16 September 2015 - 10:50 AM

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
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#19 Tbhof

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Posted 16 September 2015 - 11:14 AM

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?

#20 Shelley Ensz

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Posted 16 September 2015 - 06:29 PM

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.