Hi Everyone - I'm New
Posted 09 March 2007 - 02:46 PM
A quick run down of my Sclero background: I was diagnosed with scleroderma in Oct 05, with just a diagnosis of 'scleroderma' I.e. no rundown of the different categories. In Aug 06 I had a renal crisis which came on very suddenly, so my specialists have now ammended the diagnosis to systemic Scl, after which I was told 'oh but we thought it was just limited' .
I have been researching this disease since diagnosis, but as I can imagine you all have done, found there are many theories but nothing really conclusive regarding treatments and cures. But I am open to all thoughts be it western medicence or alternative - which is unusual for a chemist/scientist (thats me ).
I am looking forward to being an active member of this forum and sharing lots of ideas and thoughts.
Posted 09 March 2007 - 03:34 PM
I thought I would be neighborly and welcome you since I am only a hop, skip and jump away over in New Zealand!!!
You will find this a wonderful site!
Posted 09 March 2007 - 03:38 PM
Welcome to the board! Currently, I am still battling to get into a rheumatologist, which is almost impossible around here with the shortage, so I don't exactly have info about treatments, but there are plenty of people here that can fill you in. Also, since you're doing a lot of research about sclero, don't get scared by reading some of the "doomsayers" predictions since everyone can vary greatly, and so many of us seem to have beaten the odds-even without any particular treatment. Since your kidneys are involved, I'm so glad to hear that you're receiving medical treatment, and know that there are others on the board that can give you wonderful input in that department. Mine are a bit questionable at this point, but it might also be due to one particular med I'm on, so I keep my eyes open for info too. Sorry you're here due to your health, but we've got a good family here, and there are other Aussies as well that might be near you, or at least people you can connect with face to face at some point. Take care, and truly my best wishes and thoughts to you!
A big hug to our new family member,
Posted 09 March 2007 - 04:04 PM
I too live in Australia- Victoria. Which part of Australia are you from?.
I am also a fairly new member to this forum. I haven't officially been diagnosed as having Scleroderma as yet but have a high ANA - 1600 and lots of other symptoms. I have been having lots of tests but have to wait for the outcome of the results. Do you see a rheumatologist privately or at a hospital?
I saw a rheumatologist privately but also had made previously to seeing her 2 other appointments at public hospitals as I didn't know how long It would take to see her and I was desperate to see a rheumatologist as I was having problems with pressure on my sternum and throat area.
Any way you will find everyone here friendly and uplifting especially if you feel down.
Posted 09 March 2007 - 04:46 PM
Sorry that you have joined us due to your diagnosis and health problems associated with sclerdoerma, but as you already know - it's a great place for new friends that can relate, support and information.
This forum is just a small piece ofthis website so we invite you to explore our numerous Medical pages. Here is a link to Scleroderma Renal Involvement. It covers general information, treatments, recent research as well as patients stories that have kidney problems. I hope you find some valuable information.
We look forward to your being an active member. Please post often Your input if valuable to all of us.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 09 March 2007 - 09:24 PM
I'm from WA. I saw a private rhumie initially, but have been disillusioned with him. He gave me info e.g. not to worry about the critical effects of scleroderma as they don't tend to occur so early in the picture - until my renal crisis occured, whoops too late. I now have been transferred to a public hospital immunologist and he is wonderful -open to all my suggestions and disccussions (most specialists I find don't really humour you undertaking research etc.).
Hope you fare well with your rhumies.
Posted 10 March 2007 - 02:58 AM
Posted 10 March 2007 - 04:46 AM
Welcome to the forums! I am glad you found us, but sorry it is because you have scleroderma and now renal involvement! I am glad you have found a doctor who is willing to treat you as a collaborator in this illness. He sounds great!
It looks like Janey gave you some great links. I hope you get a chance to look at them.
I am sure you will find everyone here very warm, supportive and encouraging and willing to provide lots of information and advice when we can.
Posted 10 March 2007 - 05:14 AM
Just someone else dropping by to say hello and welocme! As you can see we are all very friendly and supportive. I hope you get the time to read the links that Janey provided.
We look forward to seeing you continue to post!
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)
Posted 10 March 2007 - 07:23 AM
Welcome to the Sclero Forums! I'm really sorry you have scleroderma, but you have come to the right place! You will find a lot of information, support, and friendship here.
Looking forward to knowing you better.
Posted 10 March 2007 - 09:05 PM
I'm in NZ, welcome to the Board.. you will find it a fantastic support.
I have Diffuse, diagnosed in 06, 34 years old. Look forward to your posts.
Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement
Posted 11 March 2007 - 12:34 PM
Posted 12 March 2007 - 03:36 PM
I am glad you are here. It's a great support system. Take care and keep on posting.
Posted 14 March 2007 - 05:46 AM
We were in Australia last April/May and absolutely loved your country! The people were really nice as well.
I am also new to the forum and have found the discussion on a variety of topics very helpful and the general conversation inspirational. I am happy you are with us.