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Matilde Acosta

Localized scleroderma to systemic

10 posts in this topic

Hi all, I am diagnosed with systemic scleroderma for 12 years, but a month ago my doctor gave me a general physical checkup and told me that my scleroderma is located in the skin and muscles, and that apart from the dark spots that have already submitted and can only skin dryness and itching, I have many pains and until this I have not engaged my internal organs, but gastroesophageal reflux, which is controlled.

This new diagnosis has brought me some confusion, it's like you say you have asthma for 12 years and then you say it's bronchitis, to give an example.

I wonder if any of you have gone through this situation and how they controlled the rigidity constraints produces muchosdolores and daily chores, in addition to the dryness of my skin very itchy, body control it with creams but leather hair not to use because it produces many scales as well in the face.

 

I love this space and get a hug

Matilde

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Hi Matilda!

 

It's really nice to hear from you.

 

I'm sorry you are having a lot of pain - when the muscles get involved, you suddenly realize how many of them there are and how having them involved can make daily living a lot harder. I can sympathize with you on that and also the dry skin. I carry around my own private snowstorm - lots of white flakes and itching. Using creams and moisturizers seems to help some, but nothing ever really makes it go away.

 

As for the new diagnosis, could it be that the doctor is 'updating' his diagnosis to reflect your condition now? The names the doctors give our disease also seem to vary from place to place and doctor to doctor. My rheumatologist said I had "systemic sclerosis sine scleroderma" but the pulmonary hypertension doctor called it CREST - until he corrected her! :lol:

 

Has your doctor said anything about changing how he is treating you? It sounds like your disease is more widespread now and perhaps it is time for him to think about different medications (of course, I am not a doctor). Are your lungs, heart, and kidneys still alright? Will your doctor be doing more testing?

 

I hope you'll post again and keep us up to date with how you are doing.

 

Many warm hugs and best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Matilde

 

How nice to hear from you! That said I am sorry it's because you've gone "systemic". I echo what Jeannie has said about whether the usual tests are going to be done, lung function, ECHO, renal function to name a few.

 

I was diagnosed straight off with diffuse systemic and there's no chance of it changing unfortunately! :angry:

 

Please let us know how you get on.

 

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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Hi Matilde,

 

It's good to hear from you again!

 

I'm afraid I can't add anything to the good advice given to you by Jeannie and Amanda, but I do hope that if you are to have any more tests they produce good results and your doctor can reassure you.

 

Do please let us know how you get on.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jeanne, Joelf and Amanda, thanks for answering, are often helpful to exchange experiences with our peers and that through this cleared some doubts about the symptoms and diagnosis, which can not be done in the office, is the importance of these forums to improve the quality of life through communication.

Amanda, you're the first person to share with me what the scales on the skin, and thought there had to do with scleroderma, in the body use moisturizers that improve a lot, but in the scalp, gives the feeling of having dandruff , but you can not use anti-dandruff shampoo because it makes it worse, the doctor told me to put oil on the scalp children as dryness is great and not transpired, but very greasy hair ... incomprehensible.

My doctor prescribed me anti-inflammatory treating only the pain and stiffness, moisturizers and omeoprazole for reflux, I have years with this treatment, therefore, the change of diagnosis did not change much from the treatment.

Recently and immediately after a very strong flu have given me, I evaluated the lungs and are good in December as my doctor was away, I saw another rheumatologist and told me I did not have my scleroderma raynaud and was well Of course, removing the limitations that I feel stiffness.

 

My doctor said that the sclerosis is stationary. Try to find another medical opinion and I'll let you know the results.

Receive a deep affection for me and a BIG HUG to all

Matilde

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Hello, I hope you are doing well, as I promised and I have the result of consultation with my rheumatologist, mainly to clarify the diagnosis, my question was that for 12 years told me she had systemic scleroderma and now a few months ago I said it located.

 

Now I explained that I had systemic scleroderma skin and muscles located in, my first thought is that they had gone mad, as I will have systemic and localized at the same time? Reading on the topic I saw was not wrong as systemic scleroderma is divided in 2, diffuse systemic scleroderma and systemic scleroderma localized.

 

It is good to clarify this because many people refer to the system like the diffuse, what happens is that answers to an old classification of the same.

 

I hope I have Discip this doubt and that we clear our diagnosis, it depends yaque our evolution and the correct orientation of our treatment.

 

Receive a warm hug and thanks for sharing

 

Matilde

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Hello Matilde

 

I have both the systemic and localised forms of scleroderma being diffuse, morphea, and bullous morphea which is the blistering form of morphea and very rare!

 

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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The important thing is to know the difference, the diffuse involves internal organs and Raynaud, as well as skin glasses, etc. localized and does not involve internal organs and presents the raynaud. It is important to clarify and share opinions, not to go into confusion and above all, discuss our concerns with our physician.

 

A big hugs and I love them

 

Matilde

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Matilde and all others that have replied,

 

Thank you for your post. Just reading this has taught me a lot.

 

Its nice to know that I am not crazy when I try lotion after lotion and dandruff shampoo after dandruff shampoo and still itch like crazy. :emoticon-dont-know:

 

Hope things are looking up for you and once again :thank-you:

 

Plinksgirl

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