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Are these symptoms?


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#1 JaneLesley

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Posted 08 August 2010 - 08:52 PM

Hello,

Is anyone else in the position I am at the moment? I was diognosed with Limited Scleroderma in January of this year but have had amongst other things hand problems since 2000. Back in '97 I developed IBS and throughout the last 13 years I have had all the tests available cameras up and down, barium up and down, scans and even key hole surgery.

In '08 I was told I also had IBS of the upper stomach, as well as gastritis, a hiatus hernia and severe reflux. My Rheumatologist has just told me that these stomach problems are not a symptom of Scleroderma and he is therefore unable to help me! When is IBS a symptom of Scleroderma and when is it not?

I also suffer from very painful joints - ankles, knees and elbows in particular - they swell up at the same time as my hands and wrists - I have been told there is no skin involvement at these particular joints and so this is also not a symptom of Scleroderma!

Having read various symptoms associated with Scleroderma on this site and also various questions asked at this Forum, I am now a bit confused as to what actually is and isn't a symptom. I am still suffering and am not getting any help with these problems.

Has anyone else had this kind of non-diognosis? I would be very grateful for any advice on offer.

Warm wishes to you all

Jane

#2 Amanda Thorpe

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Posted 09 August 2010 - 02:48 AM

Hello Jane

All of the symptoms you mention, various gastrointestinal problems and join swelling and pain can all be associated with scleroderma. Now I can't say for sure your symptoms are caused by scleroderma because I am not medically trained to do so, all I can say is that they all can be associated with scleroderma. Here's a link to how scleroderma can effect the body and what symptoms can result.

I would strongly suggest that you get a referral to a scleroderma specialist because you are currently being treated by a rheumatologist who is unaware of the havoc scleroderma can cause the body, gastrointestinal issues are very common in limited scleroderma. What you also want to remember is that if your rheumatologist is unaware of the full range of scleroderma symptoms you are never going to be screened for them or have them treated.

Here is a list from the Scleroderma Society's website detailing specialists in the UK, the list includes all specialties so you'll want to just pick out the rheumatologists. I am under the Royal Free in London which is a centre of excellence for scleroderma and I highly recommend them.

As much as we would like to be able to see any rheumatologist and find them to be experts in our disease that's just not the case which is why it's so important to be your own advocate and get involved in the care you receive. Should you get a referral to an expert and find that the symptoms you have mentioned are in fact as a result of scleroderma and you then get the appropriate medication, you may want to go back to your current rheumatologist and give them a bit of education.

Take care and keep posting.

PS I just had a thought, dangerous I know, as the cause of joint pain and swelling could be rheumatological in nature, whether sclero or not, if a rheumatologist doesn't deal with it who does...the milkman?
Amanda Thorpe
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#3 JaneLesley

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Posted 09 August 2010 - 03:15 AM

Amanda,

Very many thanks for your kind words of wisdom - I have a referral to Bath (one of the names on your list) for October so hopefully I can go armed with my list and thanks to you I won't feel silly bringing up so many various complaints.

I nearly said fingers crossed but being as they are not moving today am going to have to find something else to cross instead!

Once again, very many thanks.

Jane

#4 Amanda Thorpe

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Posted 09 August 2010 - 03:34 AM

Superb! Write your list, take it with you and be insistant upon getting the care you deserve.

Take care.
Amanda Thorpe
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#5 Jeannie McClelland

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Posted 09 August 2010 - 04:02 AM

Way to go, Ladies! Absolutely spot on.

Jane, you should bring up whatever symptom you are having. It's part of giving (and taking) a good history. If a doctor is being dismissive of your symptoms, you are (in my opinion) seeing the wrong doctor.

Before I finally took matters into my own hands and sought out a center of excellence, I was misdiagnosed with asthma. They did look very briefly at scleroderma because a very high ANA forced them to, but I was told it couldn't be scleroderma because there was no skin tightening. Humpf. A rheumatologist told me I was perfectly healthy and would almost certainly never develop 'anything'. My goodness, were they wrong.

Self-advocacy is a survival trait and so is not sticking to the wrong doctor.

Good luck with your referral and let us know how it goes.

Warm wishes,
Jeannie McClelland
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