New Diagnosis. Looking for advice, help, and information.

7 posts in this topic

Hi....My mom was recently diagnosed with scleroderma.  We do not yet know how serious, which type, and are awaiting appointments.  I have been researching online and have managed to scare myself and am looking for advice, information, and anything that you can suggest we do to help my mom.


She has  Raynaud's...I would say 10-20 times a day.

She has tightenting of the skin, arms and hands.

She has severe swelling of her joints and as well a lot of swelling (particularly ankles).

She has interstitial cystitis which is basically chronic severe bladder infections... I am unsure if those are related?

She is having severe allergy like symptoms which are affecting her ability to breathe on a regular/daily basis.

Can anyone suggest what we should do first?  Is there somewhere we should go where they would be best able to help her? 


Her appointment for details and to see a rheumatologist is December 9th....another month away and I am just very worried....


Any advice or info you could provide would be MOST appreciated.


Big Thanks from Canada :)

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Hello Robida


Welcome and it's so unhelpful when doctors just give the diagnosis of scleroderma! I was given this diagnosis and a leaflet which after reading realised that I in fact had scleroderma systemic sclerosis and once I saw an expert this became diffuse systemic scleroderma. The thing is, most doctors have no real understanding of scleroderma let alone that it has so many different types but what a difference there is between morphea scleroderma (localised, never life threatening, never affects internal organs) and systemic scleroderma (can affect internal organs and life expectancy). See?


The best thing you can do is make sure the doctor your mother is seeing is a scleroderma expert at best and a rheumatologist who is at least familiar with scleroderma. It is too complex a disease to leave to chance so it may be worthwhile doing some research about the doctor your mother is going to see. 


You might find it helpful to look at our video selection which includes diagnosis of scleroderma, symptoms of scleroderma, types of scleroderma to name but a few. They're bite size so easy to take in when you're head is all over the place.


Interstitial cystitis (IC) is an inflammation of the bladder and is also an autoimmune disease, I was diagnosed with it in 2004, scleroderma came in 2007. It's common to have more than one autoimmune disease for sure! IC is no walk in the park, the pain can be severe and the frequency (peeing every 15 minutes) unbearable. With IC just a teaspoon of urine can irritate the bladder, the good news is that it can be treated.


The best thing you can do is prepare for the upcoming appointment, have your mother write her questions down, have someone go in with her not just to remember her questions but all of the answers. For your mother, think about how YOU want the consultation to go before it happens so you're not caught off guard.


Post questions as they come and I suggest you stay here, people on the scleroderma "surf" board end up fish food! Here you can be sure of accurate up to date information.


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 Robida,


Welcome to these forums!


I'm sorry to hear that your mother has recently been diagnosed with Scleroderma and I can understand how worried and anxious you must be feeling.


I would second Amanda's advice about consulting Scleroderma expert as this complex disease requires specialist knowledge and expertise. Her link includes details of the Scleroderma Clinical Trials Consortium which includes Canada (scroll down the page for the details.)


In order to give you some more information, I've included links to our medical pages and also to our pages on Raynaud's, Skin Involvement, Interstitial Cystitis and Skeletal Involvement which I do hope that you will find helpful; I do understand the folly of researching online about Scleroderma, as I'm afraid there is an awful lot of scaremongering and unhelpful advice out there!


Please let us know how your mother gets on with her appointment on December 9th.


Kind regards,

Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you, ladies.


Yes, it's very scary. 


Here is the official you know which type it means she has?


There is an altered sclerosed dermal collagen, with foci of perivascular lymphoplasmacytic infiltrate, features in keeping with scleroderma....Diagnosis: Scleroderma.


Does that mean anything to you guys....?


Just really wondering which type she has.



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Don't you just hate it when they use big words that hardly anybody knows.   I am fairly conversant with medical terms, and know more or less what each of those words mean but as a diagnosis of whether it is Limited, Diffuse or Localised I have no Idea.  


When I received my diagnosis the laboratory results said:  positive ANA of 1:2480 which indicates CREST.   Quite straightforward and easy to research.   The years have rolled on since then and CREST is usually referred to now as Limited Systemic Sclerosis.


As all of us here know, one can have blood tests indicating the possibility of Scleroderma but diagnosis depends on assessment of symptoms primarily, because some people's blood tests are normal but symptoms are severe.   Your Mum has symptoms that's for sure and that diagnosis confirms that it is Scleroderma but you will have to ask a Doctor to explain what type it is I think.


Best wishes


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I fully agree with the recommendation to see a scleroderma expert if possible.  Most rheumatologists see very few scleroderma patients in their careers.


In addition to the resources suggested above, you may want to go to the Scleroderma Education Project website at for more detailed information on scleroderma diagnosis and treatment.  One of the sections is the Guide for New and Future Patients, which has discussions on preparing for doctor visits and suggested baseline and routine testing that you may find helpful.

Ed Harris

Scleroderma Education Project

A member of the ISN's Scleroderma Webmasters Association (SWA)

(Only SWA members may post links to their own site in forums posts)

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Hi Robida,


You've already gotten some great info. I just want to say hello and welcome to Sclero Forums for you and your mom. Her scleroderma expert will determine what type of scleroderma she has.  From your brief description, it sounds as though she will probably be in the "systemic sclerosis" category.


It is often three to six months for people to get in to see a rheumatologist for the first time, so altogether your mother is getting in quite promptly, even though I'm sure it doesn't feel like that to any of you.  I'm just saying, comparatively.  In the meantime your mother should see her primary care doctor, of course, for any or all new or worsening symptoms.


While you are biding time, you might want to look at our Raynaud's Prevention and Treatments section.  The section even includes some wonderful videos by Amanda Thorpe. There are many ideas for how to avoid attacks in the first place (which is best), how to properly and quickly rewarm from them, and treatment suggestions for cases where prevention does not suffice. Many of us were able to get control of Raynaud's by eliminating triggers, such as caffeine, nicotine, exposure to cold or stress, or vasoconstricting medications.


Odds are that your mother will soon feel better just finally being properly diagnosed. I'm sending lots of good wishes your way!



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

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