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Skin Biopsy has "characteristics of scleroderma"?


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#1 Barbara2012

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Posted 29 July 2013 - 02:29 PM

Hi everyone.This is my first time putting anything on here but I do have a question, for whoever may be able to answer it.

 

I had a skin biopsy done and the dermatologist said it was not diagnostic of scleroderma but had characteristics of scleroderma!

 

What does that mean?



#2 Shelley Ensz

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Posted 29 July 2013 - 03:55 PM

Hi Barbara,

 

Welcome to Sclero Forums!

 

I'm befuddled myself as to what your dermatologist meant.  It would seem to me that they really and truly owe you a much better explanation than that!

 

Did they refer you to another doctor for anything or recommend any treatment? 

 

:emoticon-hug:


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Shelley Ensz
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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.

#3 Joelf

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Posted 29 July 2013 - 11:01 PM

Hi Barbara,

 

Welcome to these forums!

 

I'm not sure what your dermatologist meant either; Scleroderma is a very difficult disease to diagnose and affects all sufferers differently, so perhaps they meant that your skin biopsy showed signs of possible Scleroderma but they couldn't say for certain?  I do wonder if it's possible that they don't really know an awful lot about Scleroderma themselves and so are giving you a fairly non committal answer! ;) 

 

I would be inclined to go back to them and request a more detailed explanation.

 

Kind regards,


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#4 Amanda Thorpe

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Posted 31 July 2013 - 11:08 AM

Hello Barbara

 

As you no doubt paid for he consultation have you considered asking for a refund?! Good grief, don't doctors think?

 

The only thing you can do is ask for clarification of what this means as well as what type of scleroderma does it have characteristics of. Sorry but we're stumped!

 

Take care.


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#5 Barbara2012

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Posted 31 July 2013 - 04:01 PM

I did go back to the dermatologist and they did confirm it was scleroderma! 



#6 judyt

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Posted 31 July 2013 - 08:04 PM

Hello Barbara,

 

Well, that is that question answered, but it just raises a whole lot more doesn't it.   I am sorry that you have received that response but really, now you need to pursue it further so you know just what you are dealing with and what treatment options there are.

 

You haven't said yet where you live and unfortunately that could affect what options you have.   For instance, I live in New Zealand and if the best treatment is UVA1, that is not available here.

 

Having lived most of my life with Limited Systemic Sclerosis, and having waited 37 long years to get a definitive diagnosis, I know only too well that doing nothing is the least helpful of all.   I had no choice because nobody recognised what was going on, but if they had, then maybe I would be in a better position now.

 

So my suggestion is that you continue looking into a proper diagnosis and treatment plan as soon as possible.

 

Best wishes to you from the upside down side of the world.

Judyt



#7 Joelf

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Posted 01 August 2013 - 12:06 PM

Hi Barbara,

 

Although your dermatologist has confirmed the diagnosis of Scleroderma, you will still need to discuss treatment options with them and they should certainly give you more information than just a vague diagnosis. I've included a link to our page on Scleroderma Experts; we do recommend that if possible, our members consult a Scleroderma specialist as sadly many rheumatologists and dermatologists do not have the knowledge and expertise to deal with this complex disease.

 

Please do keep posting and update us on your treatment programme.

 

Kind regards,


Jo Frowde
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#8 Shelley Ensz

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Posted 01 August 2013 - 03:09 PM

Hi Barbara,

 

Is it just me, or does this seem to be a case of two steps forward, one step back?  I'm sorry you have scleroderma (of whatever type) but I'm also glad that you've achieved a diagnosis. 

 

Judy and Jo are spot on, as usual, in that the big question now is, exactly what type of scleroderma do you have?  There are many different types and they vary drastically in how they can affect us, and you need to know what type in order to get the best evaluation and treatment.

 

I'm pretty sure I see a Scleroderma Expert in your future.  Odds are you will need to get a referral to one because usually the local doctors have exhausted the limits of their knowledge on the subject by merely trying to pronounce the word.

 

If you doctor didn't specify which type (which happens to be extremely common), you will probably be able to figure it out yourself from the link above.  I am thinking you might have localized (morphea/linear), since that is the most popular type to be diagnosed via a skin biopsy; and of those, most likely morphea, because linear is so unique that it is usually diagnosed just by looking at it.

 

Morphea appears in red or purplish or brownish sort of skin patches that often have a lighter center, such as pink or light purple or beige. Most people just get one or two spots that are fairly mild and may even start to clear up on their own in three to five years.  But some people develop more spots, or larger, deeper or more prominent spots (like over a joint or on the face.)  Currently UVA1 phototherapy seems to be the first-line treatment they recommend in most cases, and it shows a very good success rate.

 

But, I've gone on and on, with all sorts of assumptions, and you know what "assume" means!  Did your doctor share anything more with you, like the type of scleroderma, and your possible treatment options?

 

: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.