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patvp1

Where to start

13 posts in this topic

Hi,

I am new to the forum and am not quite sure where to start. I suppose I will take it from the top :unsure:

 

I am 72 years old (73 next month) and recently my general practitioner informed me I possibly had scleroderma. She has referred me to a rheumatologist in Bundaberg, but Queensland Health being what it is !! it may take forever LOL. I would appreciate a list of specialists in this area or for that matter in Queensland.

 

I have always had a history of arthritis, joints swelling for no apparent reason, this was in my early thirties. I had a major heart attack 16 years ago and they (medical staff) could not understand why, as I was not overweight, had no cholesterol problems etc. so they put it down to stress. No one was more surprised than I when it was discovered that I had had three previous heart attacks (scarring on the heart).

 

Anyway I had by-pass surgery 12 months later and seemed OK. Seven years ago I was operated on for bowel cancer (successful) but am still having problems with constipation one minute then diahorrhea the next. At the moment, in the winter months I have Raynaud's flare up and have been told by various doctors it is something I have to put up with :woohoo:

 

Now the situation is getting worse, in particular my hands. First thing in the morning they are swollen and very painful and only taking pain killers seems to work. My lower back is very painful and I cannot stand for too long, am also finding sort of muscle cramps which distort my feet, hands, ankles and neck. Shortness of breath is also becoming a problem, I live in a high set house and two steps at a time is all I can manage without resting, finding also that any activity undertaken leaves my joints and muscles aching for two or three days afterwards (like making pastry yesterday, very sore hands today).

 

Scleroderma came up in conversation with one of my cousins in the U.K. over a holiday, it appears that three cousins all have forms of scleroderma and her specialist has told her it could be hereditary.

Have to add, my sister had SLE and died in 1988 at 45 years old, she had been diagnosed at 23 and luckily had an exceptional specialist in Melbourne.

 

I am very confused as to the different types of scleroderma and of course worried as to the progression of this condition, it does not help that I live alone, more time to think.

I am sorry I have rambled on about this and please accept my apologies but I really did not know who to get in touch with and who could tell me "what on earth is going on?"

Thank you for listening.

 

Regards patvp1

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Hello Pat,

 

Welcome to our sub-forum. So pleased that you thought to contact us for some answers!

 

When looking at your post I was not sure if SLE in regard to your sister was Scleroderma. Can you confirm that this is what she had also.

 

Yes, scleroderma throws up some weird and wonderful symptoms, but no two people are ever the same. If you are wondering whether you have systemic scleroderma or limited scleroderma this will depend on what the results of tests are when you see your rheumatologist. Either way there will be no answers to the questions "what will happen next". It's all "a wait and see" disease.

 

I do not have scleroderma myself so I can only help lead you in the right direction. There is a link on this site to our Queensland organisation. You can contact them via email or telephone. We do not give names of specialists. I think when you go along, and I hope you don't need to wait too long, you will be able to judge for yourself how much this rheumatologist knows about scleroderma.

Also if the wait is too long perhaps you could visit your general practitioner again to get the appointment put forward. It is worth a try.

 

I am sure others on this forum will have some advice and support for you.

 

Looking forward to hearing how things go.

:emoticons-group-hug:

 

Kind regards

 

Seems that with the shortness of breath you need to see a rheumatologist as soon as you can

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Sorry - Should have been more specific, SLE, Systemic Lupus Erythamatosis, I think that is how you spell it... which is also an autoimmune disease; my general practitioner did give me tablets last month which are used to treat SLE. I took them for three days as they nearly drove me mad, felt as though all my joints were crawling with ants LOL, best way I can describe it. Just wish I could get to the bottom of all this. Also forgot to add I am having trouble swallowing food, it feels as though sometimes it is coming up the back of my throat and down my nose; sometimes I almost choke. Sorry am offloading again.

patvp1

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Hi Pat

 

I live in Rockhampton. We don't have a rheumatologist here...surprise,surprise. I see one who comes up from Brisbane, and the first time I saw him I had to wait 2 months. If I want to see a different one I would have to travel to Brisbane. I also attend the Thoracic Medicine department at the Royal Brisbane hospital. They are in charge of my heart and lungs...they are interested in Scleroderma patients.

 

I hope you get to see a specialist soon.

 

Take care

 

Helen

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Hi Helen and Pat,

 

You are not alone in needing to travel long distances to see a rheumatologist, especially one who specialises in scleroderma. This is a problem that all States in Australia share.

 

This is unfortunate of course. There are wonderful specialists in Capital cities. Some do travel to large cities in the rural areas, but yes, the wait can be a problem. As scleroderma needs to be monitored closely this can be so hard for you I know.

 

There is no way around this problem. We do have in Victoria two specialist clinical scleroderma nurses who do consult on ulcers via skype. Of course this is not the norm, but a great tool for those in remote areas.

 

Thanks for your comment Helen

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Hi Pat,

 

A warm welcome to these friendly and helpful forums!

 

I'm so sorry to hear that you've been suffering with so many horrible health problems. Your doctors' comment that your Raynaud's symptoms are something "you have to put up with" is really less than helpful as there are medications you can take to help with the discomfort and pain you're suffering. I have Limited Systemic Sclero and like you have suffered greatly with swollen fingers and painful joints; I also had shortage of breath which in my case was a symptom of interstitial lung disease, so I can understand how worried and confused you're feeling.

 

Are you able to consult a Scleroderma specialist? I've included a link here to the Scleroderma Clinical Trials Consortium which I hope might enable you to find a specialist as sadly a lot of rheumatologists just do not have the expertise to deal with this complex disease.

 

I've also included a link to Limited and Diffuse Scleroderma which I hope you'll find helpful and hopefully it will explain a little more about this bizarre disease to you. As far as the progression of the disease is concerned it's very difficult to give any sort of timescale, as Sclero tends to affect everybody differently and no two people suffer exactly the same symptoms which is another reason to consult a specialist.

 

The very good news is that now you've found our forums you are no longer alone, worrying and looking for answers; you're amongst friends who understand exactly what you are suffering.

 

Do please keep posting and let us know how you are faring.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Pat,

 

Welcome to the Forums. I was very interested to see you have such a family history of scleroderma. Of course I have no medical training (I thought 'patella' was that chocolate-hazelnut spread), but I wonder if what you and your relatives might have is Familial Scleroderma. Here's a link to the page on Genetics.

 

One of the traits we all share seems to be reading about the disease and its various symptoms, so I'm going to start you off right with a couple more links. Since you are on your way to winter right now, here's a link to Raynaud's. To some extent you do have to just live with it, but there are some treatments and loads of tips to help you deal with it.

 

And lastly, here's the link to the Queensland site.

 

I hope you'll post often and let us get to know you.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Pat

 

Welcome to the forums! You've already been given the appropriate links by Jo and Jeannie so I'll just say welcome to the weird 'n' wacky worlds of scleroderma!

 

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)

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Hi - And thank you all so much for your welcome to this site and also for the advice and help received, marvellous.

 

After trawling around the computer most of the morning and as usual trying to find answers, came across the newsletter of the Australian Scleroderma Interest Group, "Scleroderma Connections".

 

The best part was they listed a practice on the Sunshine Coast :emoticons-yes: which may be a better option than waiting for months for a public hospital appointment in Bundaberg (he is only there once a month) the private practice do not (sadly) bulk bill and being on a pension I may have a little difficulty with costs. But never mind, as long as I can get some answers. I will need to get a referral from my general practitioner and will take it from there.

 

Fingers crossed.

 

Will keep in touch :thank-you::you-rock: patvp1

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Hi Pat,

 

That is great news. This has given me the idea of telling others about the Australian Scleroderma Interest Group and the work they are doing. They are a wonderful group of dedicated specialist who have come together to pool their knowledge on scleroderma.

 

Great that you found them, and helping me to keep on the ball with information to all here in Australia.

 

:emoticons-group-hug:

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:emoticons-yes: .Rang the practice at the Sunshine Coast, the receptionist asked me who I wanted to see in particular; told her anyone who dealt with scleroderma.....answer äll our doctors deal with scleroderma :lol: So now have an appointment but not until the 4th July; seems a long time to wait, but then again Queensland seems to be severely lacking in specialists :o

 

The last few days have been pretty bad so am putting it down to a "flare up" have been so very tired plus my tongue is sore and feels inflamed and sugar and salt seem to make it worse :blush: don't know if it is one of the symptoms; never mind, we shall persevere and roll on July when possibly I may get some answers.

 

Meanwhile everyone..take care... :thank-you:

 

Patvp

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Hi Patvp,

 

Just a thought, besides using a special moisturizing mouthwash (here in the USA the brand is Biotene), just drinking lots and lots of water might help the soreness in your tongue. I know that when my body decides I'm a bit dehydrated, no matter what my brain (or bladder!) thinks, my tongue will get sore and the inside of my mouth easily irritated. Since we're all supposed to drink more water than most of us do, it's an easy and safe thing to try.

 

I'm glad you got an appointment so close by, even if it isn't until July. Did you tell them you'd take a cancellation if one comes up? You might do that once you've had your referral.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Patvp

 

All the doctors treat scleroderma...really!! Where is this place paradise?

 

Trying to get a cancellation is a good idea, if not good things come to those who wait! :lol:

 

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)

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