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#1 cal024

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Posted 28 September 2011 - 07:07 PM

Hi, I am 51 and living in Perth. Was diagnosed with rheumatoid arthritis when 12, and scleroderma when 19. I have had all the usual joint aches and inflammations, the gastric reflux and of course Raynauds. All of this was extreme when I was 11-25, and then it seemed to settle with everything still there but more subdued.

Over the last 5-10 years it has not been so much the aches as the problems with the skin around my mouth. This has tightened to the point that if I relax my mouth gapes, and when I close my lips together even softly the skin pulls and puckers.

I was wondering if there is anyone else that has this problem.

I am trying to find a specialist in Perth that is aware of scleroderma as my old one is retired and I haven't been to one in years as I thought I was fine (and mostly I was).

I have always been a very positive glass half full type of person, but this together with the rest has just hit me like a red hot poker. I suppose I should have looked into this before it got to this point, but thought it would stop or go away of its own accord.

Always looking on the bright side of life - mostly.

Chris

#2 Robyn Sims

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Posted 28 September 2011 - 08:00 PM

Hi Chris,

Welcome to the Forum Chris!

You certainly have had a long experience with scleroderma and am sorry that your doctor has retired.

The problem with your mouth is very common with scleroderma. Glad to hear that you are a positive person (mostly), things can become overwhelming at times.

If you contact Scleroderma Australia through their website www.sclerodermaaustralia.com.au they will be able to head you in the right direction regarding a Scleroderma Clinic in Western Australia. This may be a good starting point to replacing your doctor.

Others may have some advice regarding perhaps exercises you can do for the muscles around the mouth. They seem to come up with great advice.

#3 cal024

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Posted 28 September 2011 - 08:43 PM

Hi Robyn,

Thanks for that. Yes I do mouth stretching exercises. And I am mostly positive. I was recently made redundant and when asked by someone how awful did I feel, my reply was I have 2 beautiful and smart children, a home (albeit shared with the bank) and my next challenge is just around the corner (hopefully). But I do believe that something will come along and scleroderma won't keep me down for long either

I have realised that after 40 years it will not go away and that at my age I need to be more proactive, hence my looking for a specialist that knows scleroderma.

I have been lucky that between the ages of 25 and 40 it was relatively mild and allowed me to have my 2 children now 12 and 18 without the forecast problems.

But I want to be outrageous not slide into into old age. Glass of red wine in one hand and chocolate in the other!

#4 Shelley Ensz

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Posted 28 September 2011 - 09:02 PM

Hi Chris,

Welcome to Sclero Forums! I'm glad you found us.

And now I hope you can find a good scleroderma doctor, with Robyn's help.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Joelf

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Posted 29 September 2011 - 11:40 AM

Hi Chris,

Welcome to these helpful and informative forums!

I'm sorry to hear that you're now having problems with the skin around your mouth and that your Scleroderma doctor has now retired. I do hope that you'll be able to find another in whom you can have confidence.

I've included a link to Microstomia (small mouth) which I hope you'll find interesting and helpful. We also have another thread about Scleroderma lips which should give you some more information about the condition.

One thing is certain though; a positive attitude such as yours goes a long way and is a great bonus!! I totally agree with your outlook (although I would probably swap the glass of red wine for a gin and tonic!! :emoticons-yes: ;) )

I'm very pleased that you've joined our community and I'm looking forward to reading more of your posts.

Kind regards,

Jo Frowde
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#6 Amanda Thorpe

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Posted 29 September 2011 - 04:44 PM

Hello Chris

Welcome to the forums and :flowers: these are for you for having lived so long and so well with scleroderma!

Sorry you are having mouth problems, although my mouth and lips are smaller I can still disguise the lack of lip with a good lipstick and pencil. I haven't had the problems you are having and hope that you can find a scleroderma expert who can help you.

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

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Posted 18 October 2011 - 05:43 AM

Hi again Chris,

Sorry to hear that you were made redundant. This can be a daunting task, especially if you have been in the one position for some time. I hope things are going well.

Were you able to find a good specialist, ie a Rheumatologist very familiar with scleroderma? I hope so. You can always ring around yourself to rhuematologists and ask this question of the receptionist. Sometimes it's best to take control yourself!

I hope the posts from all the volunteers on this forum have been helpful.

#8 Shelley Ensz

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Posted 27 October 2011 - 09:21 AM

Hi Chris,

How are you doing, now that you've found us? Have you been able to find a scleroderma expert yet, or made any progress with the employment aspect? Remember, we are here for you.

:emoticons-group-hug:
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 sclero.org.

#9 helencar

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Posted 01 November 2011 - 01:48 AM

Hi Chris,

I also live in Perth and was diagnosed about two years ago with CREST syndrome.
I got a referral from my general practitioner to the Rheumatology department at Royal Perth Hospital and am now on the scleroderma trial program. All the tests are done free at Royal Perth.

Hope this helps
Helen

#10 Robyn Sims

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Posted 01 November 2011 - 02:51 AM

Hi Helen,

Welcome to our forum Helen,

So glad to hear that you have attended the Royal Perth at the rheumatology department and are now on the scleroderma database.

I believe there are now over 1000 people registered on this database and at the next World Congress in Madrid, the Australian Scleroderma Interest Group will be presenting some of the research which is being done via this database information.

Would be interested in your feedback. I know that those who are on the programme usually feel in good hands. Some have their own rheumatologist and go to the hospital every six months or yearly for a check. This is a great way of keeping your condition monitored.

#11 Joelf

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Posted 01 November 2011 - 08:59 AM

Hi Helen,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with CREST aka Limited Scleroderma. However, it does sound as if you're receiving good treatment from Scleroderma experts at The Royal Perth Hospital, which is so important with this bizarre disease.

Do please keep posting and let us know how you're getting on with the tests and trial programme.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#12 Amanda Thorpe

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Posted 02 November 2011 - 02:06 PM

Hello Helen

Welcome to the forums! I'm glad you were able to find and receive good medical care, did it take you long to get diagnosed?

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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