4 posts in this topic

New member here, 2 years diagnosed, treatment very little (as specialist was very uninterested) medication: natural products. Massage once every 3 weeks.

 

Symptoms: tight skin from neck to knees, varies day to day. Sore wrists with limited movement, unable to straighten fingers that also have clubbing. Sharp pains in my arms at times, lots of nap times, reflux (managed), mouth seems to be getting smaller.

 

Going on 2 years now, I actually had to tell my initial doctor to test for Scleroderma, as I had been having Raynaud's for 18 months. I have only seen my specialist twice, after the second visit I decided that he was not interested in me as a patient and have never been back.

 

I work casually in a busy cafe making sandwiches and coffees and don't let the joint pain get to me, as I know that I will not be able to work for ever as it worsens. I also have regular massages every three weeks, she has gotten used to the different feeling and finds it unusual.

 

If anyone can recommend a great specialist on the east coast of Australia I'll get my doctor to refer me to them, want one that will spend more then 5 mins with me and not even look at me.

That's currently where I am with my Scleroderma.

 

All in all managing quite well for someone that should be an active 36 year old, but feels like an 80 year old at times.

 

Forgot the most visual one, most people think I have bad sunburn on my arms, but gives me a way of educating people on Scleroderma when they ask what's wrong with my skin.

Share this post


Link to post
Share on other sites

Hi Laserjuke,

 

Welcome to these forums!

 

Sorry to hear that you've been diagnosed with Scleroderma, and that your particular specialist appears to be uninterested. We do recommend that you consult a Scleroderma expert and I've included another list here.

 

I've also included a general link for Scleroderma and also a link to our Alternative therapies page to give you some more information.

 

However, it's good that you're managing the various problems this bizarre disease throws up and that you've found our forums and joined our community. I'm looking forward to reading more of your posts.

 

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)

Share this post


Link to post
Share on other sites

Hello Laserjuke

 

Welcome to the forums! Yes you need a scleroderma expert not just someone who calls themselves an "expert." Have a look at our video section, in particular difficult diagnosis, might ring some bells?

 

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)

Share this post


Link to post
Share on other sites

Hi Laserjuke,

 

Welcome to our Forum, a good start for taking some control for yourself.

 

As mentioned in an earlier reply, there is a list here of scleroderma specialists.

 

As you mention the East Coast of Australia perhaps you could contact Scleroderma NSW, or Victoria through their website, or Scleroderma Australia. www.sclerodermaaustralia.com.au.

 

There are also scleroderma specialist clinics throughout Australia which they can help you with.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now