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Does Limited Scleroderma turn worse after 20/30 years?


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#1 georgie1111

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Posted 23 July 2011 - 04:23 PM

I have had a couple questions answered on this site so here is another. I can't recall where I heard or read this about sclero (I suffer sclero brain involvement and renal fog so memory is sluggish) but I was under the assumption that you can have sclero for decades, a milder form of it with subtle symptoms, but after 20/30 years this mild form of sclero can go retrograde and turn into diffuse scleroderma. Is this true or not? Can it go from a manageable form to life changing for?

Regards,

georgie

#2 marsha

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Posted 25 July 2011 - 10:28 AM

Georgie,

My Sclero specialist told me that Limited can NOT turn into Diffuse, as I was diagnosed with systemic sclerosis CREST, he said it can not turn into diffuse, but you can have lung involvement and heart involvement with the CREST.. I hope this helps :emoticons-group-hug:

#3 Amanda Thorpe

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Posted 25 July 2011 - 02:57 PM

Hello Georgie

As far as I know one form of scleroderma does not morph into another type as time goes by. There are two main subsets of scleroderma localised and systemic. Localised:There are two types of localized scleroderma: Linear and Morphea. Localized scleroderma affects the skin. It may also affect the underlying muscles and bones, but it does not affect internal organs, and it does not reduce a person's life expectancy.

Systemic includes diffuse, limited (aka CREST) and sine:Systemic scleroderma may affect the skin, blood vessels, and/or internal organs. When it affects the skin, it can cause the skin—most commonly on the hands and/or face—to harden. With the blood vessels, it can cause Raynaud's. When it affects the internal organs, it may cause disability or even death.

You can have both localized and systemic forms of the disease as I have and about 25% of the time, morphea can cause symptoms outside of “just” skin involvement, including reflux and fatigue. It does not mean that it is systemic or turning into systemic, just that there are one or two symptoms outside of the skin involvement.

I have both morphea, diffuse and bullous morphea so I currently have both localised and systemic scleroderma, must be greedy!

Take care.
Amanda Thorpe
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#4 Robyn Sims

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Posted 26 July 2011 - 02:23 AM

Hi Georgie and Amanda,

Seems to have your answer there Georgie. Yes you are greedy Amanda.

Over many years I have attended around eight seminars. The first cab off the rank is What is Scleroderma? Even if you are sitting in a room paying full attention to a specialist on the subject it is still very difficult to get a firm grip on the manifestations of Systemic and Limited.

However, each time I have been it is clear that no-one should say " I only have Limited Scleroderma". Both forms overlap in many ways. Someone with Limited can have very bad trouble with reflux etc., and lung and heart involvement. Systemic can be more acute at the beginning and level out after five years (again this is from my careful listening at Seminars).

We have over 300 people as members of Scleroderma Victoria. Over the years I have gotten to know many of these people. At our holiday Party each year we get to catch up, also at lots of Support Group gatherings which I sometimes can attend. Believe me there are many "old" people with scleroderma. One lady is 94 and a really lovely gentleman who helps as a volunteer in the office is over 80.

So there is no hard and fast rule about longevity and scleroderma. There are so many variables. Another thing is that we can also get other diseases or problems which have nothing at all to do with scleroderma. I guess worrying is normal, but doesn't help one much.

As for Limited turning into Systemic, mmm, Amanda has answered that one. But who knows what will happen tomorrow, let alone 20 to 30 years.

I guess what I am trying to say is Enjoy the Day. If you are newly diagnosed this can take some time, as there are lots of different processes that usually happen, for example anger, denial, blame (why me) (if only).

So after all that, keep posting any time you have a query as it is better to express your concern than bottle it up.

:emoticons-group-hug:

#5 Amanda Thorpe

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Posted 26 July 2011 - 04:35 PM

Can I just clarify that limited scleroderma is a form of systemic scleroderma. Therefore if you have limited scleroderma you already have the systemic form of the disease. The word limited refers only to the amount of skin involvement which is typically less than in diffuse, one of the other forms of systemic scleroderma.

Take care.
Amanda Thorpe
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International Scleroderma Network (ISN)

#6 befuddled

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Posted 26 July 2011 - 06:03 PM

Hi, I am new to this whole scleroderma thing! My husband is in the process of going to the doctors to find out what is wrong with him. We keep getting different answers and different diagnosis! First a doctor said it was polymyositis and another one says it is scleroderma (however, no definitive diagnosis yet) and another doctor is saying that it is fibromyalgia! I am wondering how others have been diagnosed and how you know that that is really what it is?

#7 stillriding

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Posted 27 July 2011 - 05:39 AM

Hello Befuddled

My first specialist at a small private hospital told me "I have only seen one or two cases of auto immune hepatitis but this is how you treat it...." He thought that my hands not working (raynauds etc/skin tightening/muscle weakness) was not as severe as my liver problem and did not investigate it. I gave him the flick and went for a second opinion as I felt he had missed something in his hurried expensive appointments.

As a result I recently spent 2 weeks in hospital trying to diagnose this thing. I had every test that the 4 specialists looking after me thought necessary. I have ended up with a diagnosis of scleroderma (hands/feet), polymyositis and auto immune hepatitis. Each test eliminated or confirmed something. If I had not had a very cluey liver doctor on the case, who picked up the myositis from a blood test perhaps I would still be wondering what was wrong with me. I am fortunate to live in Sydney, with access to a fantastic general practitioner and specialists. As a result of this experience I also have a lot of base line data that I can compare in years to come. So instead of saying, I think my Lungs/or swallowing has gotten worse - I can confirm this.

I also have read lots and lots, and I think that "patients" know a lot about their diseases and it is really worth scrolling through the pages of forums and websites to hear others experiences. I have never used a website to diagnose but more along the lines of "I will ask my doctor about that".

I think the biggest problem we have when first trying to diagnose is not knowing the right questions to ask. Good luck finding a specialist who is experienced with "weird". I had so much attention in hospital because they were all so fascinated by me. Hmmmm. I am seeing my Rheumatologist next week and I have a sneaking suspicion that my diagnosis is still not black and white on paper yet. But at least we know my liver is dodgy and my poor hands are going blue!

Good luck trying to pin this one down. I hope this has helped you a little bit,
Simone

#8 Robyn Sims

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Posted 27 July 2011 - 05:47 AM

Hi Simone,

Some very good advice there. It can take a couple of weeks in hospital to get to the bottom of things, and then some.

Good to hear that you are well looked after and I agree, searching websites can be tricky as some can have misinformation. It is much better to keep searching for the right doctor/doctors.

:emoticons-group-hug: