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newly diagnosed with scleroderma


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#1 Deelill

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Posted 10 May 2011 - 11:30 AM

Hi I am new to this type of thing, I was recently diagnosed with scleroderma after 2 years or possibly more, of having a high anti nuclear factor and being left due to no symptoms and my age. However now I have symptoms so they have diagnosed me with scleroderma, has anyone got any information or advice on how this progresses and what it's like?

Thank you

#2 Sweet

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Posted 10 May 2011 - 12:06 PM

Hi Dee,

Welcome to the sclero forums. I'm glad you've joined us, but I'm sure sad you've been diagnosed with Scleroderma. I've given you a link above that will tell you about it. I hope you find it helpful. What type of symptoms are you experiencing?

Again, welcome! :flowers:
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 Deelill

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Posted 10 May 2011 - 12:58 PM

Hi thank you.

The symptoms I am experiencing are an increase in my Raynaud's, pain going down my legs more the left than right and also a lot of acid and my latest symptom over the past few days has been feeling like there is phlem stuck at the back of my throat when I swallow.

Will these relieve themselves, do you know?

#4 Joelf

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Posted 10 May 2011 - 01:58 PM

Hi Deelill,

Welcome to these friendly and informative forums!

I'm sorry to hear that you've recently been diagnosed with Scleroderma. The very nature of this bizarre disease makes it very difficult to determine how it will progress as it tends to effect all of us sufferers in different ways.

As you're experiencing Raynauds and possible Gastrointestinal Problems I've included links which I hope you will find helpful.

Are you being treated by a Scleroderma Specialist? This is quite important, as many rheumatologists just do not have the expertise to deal with this unusual and complex disease.

I'm very pleased that you've found our forums and joined our community and I'm looking forward to reading your posts and getting to know you.

:emoticons-group-hug:

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#5 Amanda Thorpe

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Posted 10 May 2011 - 05:04 PM

Hello Deelill

Welcome to the forums! How will it progress...hmmm...good one that...unfortunately it's an unanswerable question. Scleroderma is almost a tailor made disease because it effects everyone differently and therefore everyone progresses differently. I know people who have successfully lived with scleroderma for decades and I have also known others who have crashed and burned early on. No one can tell you which one you're gonna be so it's better to focus on how to live with scleroderma rather than how long you'll live with scleroderma. Best make friends with it now 'cause it's a friend for life! :lol:

As Jo has said seeing a scleroderma expert is a very good idea and if you're not you may want to consider seeing one.

Take care and keep posting.
Amanda Thorpe
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#6 Robyn Sims

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Posted 10 May 2011 - 05:22 PM

Hello Deelil,

I see you have received many replies from our good friends from around the world. I can only reiterate their comments regarding the progress and seeking an expert specialist.

Finding this specialist will depend on where you live in Australia. All the eastern States have organisations which could support you. You can enquire online or by telephone. If you go to www.sclerodermaaustralia.com.au you will find links to these organisations.

It is unfortunate that your doctor cannot give you any indication of the progress of your disease, as the others have said it's a wait and see situation.
:emoticons-group-hug:

Kind regards

#7 Deelill

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Posted 11 May 2011 - 12:05 AM

thank you everyone for all your kind replies. It's nice to see that even though you feel down and isolated there is support out there if you need it. thank you

#8 Deelill

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Posted 22 May 2011 - 01:37 AM

Hi everyone,

Just thought I would post on that I have had my barium meal and swallow, it wasn't something I enjoyed and not looking forward to having it again.

It showed that I have a moderate amount of eosophageal acid. I have had a chest x ray which has shown that there is small lung volume. I have not had the results of my lung function test.

As I am sure you all have been through this but just lately I am feeling a little down at times and crying a lot and worried about what this disease will do to me. I have five beautiful kids and a wondeful supporting husband but really finding it hard to take on board I have scleroderma.

Has anyone else felt like this too.
Deelil

#9 Robyn Sims

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Posted 22 May 2011 - 03:38 AM

Hello Deelil,

You have certainly had quite a few tests done lately and the result of the lung function test still to come. I assume that you will soon see your specialist and will discuss the outcome of these tests.

If it is possible please take someone along with you to the doctors. It can be very confusing and "brain fog" is definately a problem when you are stressed in this way. Good idea to take along a few notes with you if you wish to ask questions.

Of course you are feeling down and crying. However please don't feel hopeless. These are early days and you are still learning. It takes a long time come to grips with your diagnosis. Your doctor needs to be aware of how you are feeling, please don't try to hide your feelings.

Apart from a specialist for your scleroderma you also need a great General Practitioner who is readily available to you to discuss your health issues. He or she can arrange for you to see a psychologist who are trained to help you talk through your feelings. It is so important for you to address your mental health as well.

Joining a support group can make a big difference too. Talking with others who understand can lift your spirits.

Please keep in touch

:emoticons-group-hug:

#10 Joelf

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Posted 22 May 2011 - 08:29 AM

Hi Deelill,

Thanks for letting us know the results of your tests.

I'm so sorry to hear that you're feeling depressed and worried which is perfectly understandable especially at this early stage of the disease when you're not sure how it will progress. Sometimes the fear of what might happen is worse than actually experiencing it. I can really empathise with you as before I was diagnosed I remember bursting into tears at my doctor's (most unlike me under ordinary circumstances! ;) ) I've included a link on Emotional adjustment and Scleroderma which I do hope will be helpful to you.

As Robyn has said, it's important that your general practitioner realises how you are feeling and is able to support you in every way. Do please let us know the results of your lung function tests when you receive them and remember that since joining our forums you are now no longer on your own and are sure of a sympathetic and helpful response should you need it. :emoticons-group-hug:

Jo Frowde
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#11 Amanda Thorpe

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Posted 22 May 2011 - 09:21 AM

Hello Deelill

It takes time and tears to adjust to having any chronic illness and there is no shortcut to it. As no one can tell you how your scleroderma will progress or what it will do to you there is no point worrying because you don't actually know what to worry about! There is a myriad of possible symptoms and you can't possibly get them all anyway. I worried about getting microstomia (small mouth) and never got it, I didn't worry about heart involvement and did get that! :lol:

Even if you do get a "dreaded" symptom it's not necessarily the end of world, you'll be amazed at how adaptable and resilient you really are whether you feel you are or not. We sclerodermians turn out to be tenacious little critters. :emoticons-clap:

Take care and keep posting.
Amanda Thorpe
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#12 tarah

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Posted 23 May 2011 - 07:05 PM

Hi Deelil

Reading your posts brings tears to my eyes also.
I am really feeling for the you in your sadness because I have had similar tears.

I would also like to encourage you to embrace the emotional support available by talking with a psychologist.

I have found that consulting with a psychologist has provided me with great tools in dealing with this disease, which cannot be underestimated.

Good luck
Tarah