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Horrible rheumatology appt today


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#1 inkedup

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Posted 23 February 2012 - 05:37 AM

Went to see my consultant today. She wasn't horrible, just not particulary interested.
Told me to see general practitioner about my dry eyes. Told me to see general practitioner re getting liver functions tests ( I have anti mitochondrial antibody for primary biliary cirrhosis). Told me to see general practitioner re vitamin D deficiency. Just smiled when I said my thumb was sore as calcinosis is coming through. I then had to direct her as I had lung function tests last week. She said they were normal. She didn't compare them with the last ones done last year, so I had to tell her what they were from a letter. My DLCO is about the same (61% so below average) however the others had dropped by 30%!! She then agreed I needed a CT scan and echo and would see me in a year. I know I'm a bit anxious, but I feel really fed up!

#2 Joelf

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Posted 23 February 2012 - 12:02 PM

Hi Inkedup,

Sorry to hear that you've had a disappointing appointment with your consultant.

Are you being dealt with by a Scleroderma specialist? We do recommend that you consult one if possible as sadly many rheumatologists do not have the experience and expertise to deal with such a complex disease as Scleroderma. Perhaps when you go back to your general practitioner to deal with the problems as your consultant has rather glibly suggested, you could ask for a referral.

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#3 inkedup

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Posted 23 February 2012 - 01:19 PM

Yes thanks Jo, I think I might although I've emailed a couple and I didn't get anywhere other than a friendly email back. I think a referral might be better. I really feel that I'm declining and I don't want to end up poorly through lack of intervention.

#4 Amanda Thorpe

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Posted 23 February 2012 - 01:54 PM

Hello Inkedup

Ah, the disappointing rheumatology appointment, I am afraid we all get one at some point the question is what to do about it, if anything.

Firstly if you are having an ECHO and chest CT you will be seeing her before a year surely or the results at least and who is arranging these tests? I would expect my rheumatologist to at least take an interest in dry eyes as it could be scleroderma related as could the vitamin D issue but these two issues could also be treated by your general practitioner and this may actually be easier for you in the long run.

If your rheumatologist is not a scleroderma expert I would just get my general practitioner to refer me to one straight away and forget about your current one or it may be helpful to put your concerns in writing to her or to PALS (patient advice and liaison service) which every hospital has. You are entitled to voice your concerns.

I was actually told by a scleroderma expert to see dermatology about bullous morphea if the methotrexate didn't work. I never bothered as it was the least of my worries and I could not understand how that would work, taking a form of scleroderma to a non scleroderma expert?

Take care.
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#5 inkedup

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Posted 23 February 2012 - 04:21 PM

Thanks Amanda. I have moved from Bristol (where I had excellent care inc seeing Prof Denton) to West Yorkshire.

She doesn't want to see me before a year, despite a decline in my symptoms, she never even checked my fingers ( I have severe raynauds) or checked the most obvious parts of CREST. I was a bit shocked and wasn't assertive enough. I will see my general practitioner however re another referral, I have a degree in health studies, so perhaps know too much hehe.

#6 Amanda Thorpe

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Posted 24 February 2012 - 04:31 AM

Way to go Inkedup, ditch the rheumatologist in favour of one who knows about scleroderma. From my experience people tend to see the rheumatologist every 6 months until the disease is inactive.

Take care.
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#7 Joelf

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Posted 24 February 2012 - 11:14 AM

Yes, Amanda's quite right, Inkedup.

You should be having your lungs monitored every 3-6 months if the fibrosis is still active; I have lung function tests every 6 months and see a lung consultant every 6 months (local once a year and The Brompton once a year with a 6 monthly gap between them) and a Scleroderma consultant (Royal Free) once a year now as my lung disease has improved.

Best wishes,

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#8 lizzie

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Posted 24 February 2012 - 01:17 PM

HI Inkedup, I too live in West Yorkshire, but in the are where I live, the rheumatologists are excellent even though they are not scleroderma specialists. I have been seen 3 monthly ever since I was diagnosed 5 years ago, even though I don't have any major problems. Any symptoms are followed up on with further tests and or medications as required. I feel you shoud be seen at least 6 monthly whilst the disease is active, and particularly when your lung function has declined. I would certainly ask my general practitioner about a referral to our local specilaist centre (Chapel Allerton at Leeds).
Lizzie

#9 inkedup

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Posted 25 February 2012 - 05:45 AM

Thanks Lizzie; I get seen at Royal Free, Halifax. I know I'm not an 'expert' but my blood tests show high levels of inflammation so you dont have to be Einstein to work out that it must be causing damage! Also have a very high anti mitochondrial antibody level, but everyone seems to ignore this. Dont want to end up with chronic lung and liver problems.

I shall take everyone's advice and get motivated!

#10 Cheerful Carole

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Posted 28 February 2012 - 03:01 PM

I feel so sorry for the negative way you have been treated. I am so very lucky that my rheumatologist specialises in scleroderma and I can really discuss all my problems with him and he understands what I am talking about.
My general practitioner has even read up on scleroderma since I have been diagnosed.
Hope you get some positive understanding soon

Carole x