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New...ish to Scleroderma

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7 replies to this topic

#1 Dee L

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Posted 11 October 2009 - 03:10 PM

Hi everyone

Firstly, thanks for the very informative website.

I was diagnosed with Scleroderma last November following a series of symptoms (joints stiffening, swollen hands and feet, dizzy spells, lethargy, Raynaud's, wheezy cough, shooting pains, skin discolouration, itchy all over, allergic reactions to anything I ate, breathing problems and an awful memory!)and I am being treated successfully with Methotrexate and Prednisilone. Most of these symptoms have now improved enormously although during the last few months I have started to get thick leathery skin on my hands and there are signs of this starting on my neck and face.

I don't have a wonderful relationship with my Rheumatologist and when I asked which type of Scleroderma I had I was told not to worry about it and looking on the web would only scare me! Granted, some of your stories are scary but without the knowledge how are we to fore-arm ourselves and more importantly, sharing is so therapeutic. I tried to tell him I had several episodes of waking in the night choking on bile (acid-reflux) but he blames this on my being overweight. I haven't yet told him that I have several days of loose bowel movements followed by days of wanting to go and only producing a small 'sample' and then other times I have leakages (albeit in very small quantities). No doubt this is because I am overweight!! I can't easily change my 'specialist' because I live on an island off the UK and we only have two visiting rheumatologist attached to my surgery and they both work very closely together!

When I was first diagnosed I was very scared and felt very alone but my research has led me to this and other sites and other people who are willing to share their stories. I don't feel so alone anymore.

Today, I am feeling more in control, I have learned to take one day at a time and when a new symptom appears I look it up on one of the 'Sclero' sites for an explanation and action plan. Thank goodness for the web.

You all take care out there and thank you for listening...........
Dee :emoticons-yes:

#2 northendpoet


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Posted 11 October 2009 - 05:01 PM


Good for you for getting and staying informed! I figure when it's my health, then I have to be the expert.

Welcome to the site. I've gotten tons of good info here. And, of course, much welcome patience and understanding.

Good luck on your journey!

Northend Poet
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#3 Sheryl


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Posted 11 October 2009 - 05:11 PM

Hello Dee and welcome to ISN Forums.
Sometimes it is hard talking with our doctor's and trying to get them to understand some of what we are going through. I know they are looking for the medical clues that we feed them, to help give us a proper diagnosis on all of our unusual symptoms that come on and go away sometimes just as fast. I guess at times we might look at them like they are all knowing when in fact they are learning with us on many things. I noticed one thing you talked about was the leakage. When it gets to the point of you thinking Oh my I don't know what I am going to do, then you will sit and discuss this with your doctor, or gastroenterologist if you have one. If you don't then it might be nice to find one now while the issue isn't severe. Make an appointment as he/she knows what to give you to stop that problem. It could be something as simple as bacterial overgrowth. It is late, I will check back tomorrow. You have come to a great place.
Strength and Warmth,

Sheryl Doom
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#4 Buttons


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Posted 11 October 2009 - 09:01 PM

Hi Dee
I'm pleased that you have been getting some treatment which is helping you. I live in the UK and I know it's not easy changing your doctor when they appear not to be taking some things seriously like your bowel issues. I had similar bowel issues but tried to tell my Rheumatologist who brushed me off & said that you only get those problems later in the disease. I struggled on for another 18 months & then had to go for a colonoscopy because my father had had bowel cancer in his early forties. I did tell the doctor then about the issues I was having (it was hard to discuss) & he referred me to another specialist in another hospital & now 12 months on I have just had sacral nerve stimulation done - see my post). I am glad now that I did talk about it because something could be done for me which could give me back a more of a life rather than one always worrying about getting to the toilet in time & coping with leakage issues.

Do take care


#5 Jeannie McClelland

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Posted 12 October 2009 - 04:18 AM

Hi Dee,

Welcome to the Forum! I'm sorry you needed to find us, but really glad you did.

When I first joined it, it was because it was because it seemed like the only place where I could get good information and ask any question that came to mind. I really like and respect my rheumatologist, but even he has some blind spots when it comes to the disease. He's utterly disinterested in some things and totally focused on others. Hmmm, lung issues are important, sure, but I bet he doesn't have to live daily with the gastrointestinal issues so many of us have. Posted Image

Even when we have the opportunity to 'shop' for appropriate medical care and doctors who will partner with us in our diagnosis and treatment, it seems like we still have to find the best approach to each and every person in order to get what we need. You really are ahead of the game in realizing this! (Polite, but insistent, that's my method. Try moving me before I get an answer and you'd need a couple of rugby prop forwards.)

I get pretty irritated with doctors who attribute everything to being overweight or under stress (or both). OK, maybe we are overweight or stressed, but people who are overweight get sick too, and going undiagnosed, misdiagnosed, and untreated certainly adds to the stress! I've got one daughter who is significantly overweight, despite her best efforts, and a doctor told her all her problems would go away Posted Image, if she lost her excess weight. Hmmmm~

So, once again, welcome! I'm really happy you joined. Post often and let us get to know you.
Jeannie McClelland
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#6 Amanda Thorpe

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Posted 12 October 2009 - 10:26 AM

Hello Dee

Welcome to the forum, a great place for scleroderma information if I do say so myself!

Of course you want to know what type of scleroderma you have, the different forms can progress differently and have different outcomes. I do wonder if your rheumatologist hasn't said because he isn't sure himself. I know of one person with scleroderma who was told she had diffuse and limited (you have one or the other)and localised! I'm guessing her rheumatologist wasn't sure so hedged his bets!

The UK's Scleroderma Society has produced a booklet titled Understanding and Managing Scleroderma which details the different types of scleroderma and how they may progress. You can either download it or order it for free. Perhaps you could take a copy of it with you when you see your rheumatologist next? You could always ask your general practitioner to refer you to a a scleroderma specialist here in the UK as they will most definately tell you which type you have. Have a look at the list of specialistson the Scleroderma Society site, the list includes other specialties apart from rheumatology so just pick out the rheumatologists.

I am glad you are feeling more in control now and like yourself in my early days I found connecting with other sclerodermians and hearing their experiences so beneficial.

Take care and keep posting. There is also a UK sub forum here especially for people in the UK that you're welcom to post on as well.
Amanda Thorpe
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#7 debonair susie

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Posted 12 October 2009 - 11:51 AM

Hi Dee,

This is a wonderful forum and you will find awesome support, along with helpful information.
The folks here, are considered family,as we are joined together as a result of chronic illnesses.

I concur with what has been mentioned and only want to add...doctors can make such statements about "web search scaring one", but your response is very accurate. When doctors don't provide us with "some" of the answers, we must go where the information and support is aplenty :rolleyes:

In the meantime, please find comfort in knowing that we understand your feelings...we've either been through it, are going through it, or will be going through what you are.

Welcome :flowers:
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#8 Dee L

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Posted 14 October 2009 - 12:40 AM

I just wanted to say a big thank-you :thank-you: for your responses and advice, all of which I take on board and will look into. Take care,