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Biomarker for Diffuse Scleroderma skin has been discovered!


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Warning to believe in yourself


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#1 Dee L

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Posted 04 August 2011 - 06:26 AM


As I am sitting at my desk wondering how I got myself into this state, I realise I didn't, it was a combination of my healthcarers and my own lack of confidence to stand up and say "believe me and take me seriously". I want to share this statement with you all and hope that you don't let it get so bad and the story goes.......

I was diagnosed with general Scleroderma in November 2008 and not given any specific type (probably because this is dependent on forthcoming symptoms). My many symptoms were treated with Prednisolone and Methotrexate and mostly kept under control with me returning to work after being off for 18 months!

One of the things that bothered me from the beginning was the inability to exercise or exert myself and as the other symptoms were improving this one definitely wasn't. I mentioned it each time I saw my reumatologist but was often told it would get better if I lost some weight or exercised! On a couple of occasions I got back to my car and screamed with frustration. My lifestyle changed so gradually and I was learning to live with the new symptoms on top of the breathlessness. It was a real eye-opener when I visited family in the UK and my 87 your old grandad, who runs 2 miles a morning, was shocked that I could only walk ten paces without having to stop and cough my lungs up!

I decided to seek a second opinion from Professor Denton at the Royal Free Hospital in London in January 2011 who confirmed I had systemic scleroderma and recommended to my reumatologist and my general practitioner that I have a series of tests including Lung Function, CT Scan, Echocardiogram. By Easter no appointments were forthcoming and I saw my reumatologist (for the first time since seeking a second opinion) who appeared to be put out by my getting a second opinion. I again told him how I was feeling (breathless at the slightest exertion, constant dry cough, cough-induced vomiting, losing weight) but I didn't have the strength of character to demand he send me for these tests. It would seem I started to believe I was being a nuisance (so out of character for me).

In May I put my foot down and visited my general practitioner with my husband for support (and proof to him that I was telling her everything). By now I had lost two and a half stone in weight since holiday and couldn't get through the day without vomiting. I was having acid reflux at night despite using 5 pillows and taking omeprazole and oesophogeal reflux even though I was barely eating. This time my general practitioner started the ball rolling with tests and I had a Lung Function Test and then an x-ray. I saw my reumatologist the next day who told me the x-ray showed my lungs were slightly smaller than the last x-ray but it was probably because I didn't breathe in enough!!! He also noted my heart was enlarged. At last he agreed to all the required tests!

The following week I wasn't feeling well at all (shaking inside and feeling as though I wasn't quite here) so my general practitioner sent me for an ECG which showed my heart was "all over the place" so I was told to see my general practitioner as soon as I was able. Two days later, sitting in my general practitioner's office and feeling much better than previously, she listened to my chest and asked me to sit in the waiting room whilst she spoke to a physician. I was sent to A&E where I was admitted with fluid on my lungs and pericarditis. Five days and several tests later I was taken by air-ambulance to St Thomas' Hospital in London in the Cardiac Care Unit. Three weeks and many, many tests later I was sent home with the diagnosis of sclerosis of the lungs which I understand to be irreversible and also some damage to the main chamber in my heart. I have stopped taking the Methotrexate and have started a course of IV Cyclophosphamide (third treatment next Tuesday). I am now under the care of the Lupus and Respiratory team at St Thomas' and am due to go back in September. This time I will ask all the questions and not be afraid to say it as it is!

The main reason for sharing my story (apart from therapy :VeryHappy: ) is to ask you not to hold back on anything or allow anyone to make you feel you are making a fuss. Scleroderma can become serious and the correct health care is essential to ensure you are treated appropriately.

Love to you all out there and hope you are smiling too.

D

#2 Jeannie McClelland

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Posted 04 August 2011 - 07:59 AM

Dee, thank you for sharing your story and for telling it so powerfully. I'm dreadfully sorry that things have gone so badly for you.

It's so unfortunate that this sort of thing is still going on all of the time. We have so many members who either remain undiagnosed or had to go through a long, frustrating period of time before finally getting someone to take their symptoms seriously and search diligently for an answer. It's hard to stand up for yourself, especially when you are not feeling well and a doctor keeps telling you that "it is nothing".

I hope things will go better for you and the new treatment and treatment team will turn things around. Please keep posting and let us know how you are getting on. We care.
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#3 Joelf

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Posted 04 August 2011 - 12:44 PM

Hi Dee,

Thanks for sharing your story and I'm so sorry that you've had such a bad deal from your hospitals and rheumatologists. No wonder you felt so frustrated and upset. :(

As Jeannie has stated unfortunately we have had other members in a similar position to yourself and as Scleroderma does respond better to early treatment and diagnosis it's infuriating to be brushed aside and treated like a hypochondriac. I was incredibly fortunate with everyone I dealt with; from the young general practitioner who first sent me to a consultant who thankfully didn't have an ego and realised she didn't have the expertise to deal with me, to the top lung specialist whom I saw, who knew that it was serious and commenced treatment in double quick time. Hardly a day goes by when I don't thank my lucky stars for such quick, efficient treatment.

I do hope that your treatment with IV Cyclophosphamide goes well; I also had that and it certainly did improve my lung function. Obviously everyone reacts to the same drug differently, but I really hope you will get a similar good result.

Please do keep us posted as to how you're getting on. :emoticons-group-hug:

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#4 Amanda Thorpe

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Posted 05 August 2011 - 06:05 AM

Hello Dee

How awful! Could you not have stayed under the Royal Free for treatment of your scleroderma? They would not have missed the escalation of your symptoms. I am a patient there myself and would never go anywhere else.

Maybe in the future you might want to write to the doctors involved explaining the error of their ways to enable you to get it all out and to help them with any future encounters of the scleroderma kind.

Thank fully you are now getting good care and long may it continue.

Take care and keep posting.
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#5 Dee L

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Posted 08 August 2011 - 06:07 AM

Thank you all for your good wishes.

Yes it is sad that so many sufferers are undetected especially as the literature states it should be caught early.

I am due to have my third dose of cyclophosphamide tomorrow and am really hoping it will kick in soon (patience!). I will keep you posted.

Amanda, as I live in the Channel Islands, private visits to the Royal Free would be very expensive for me and unfortunately our local government won't allow us to choose who we see. I even have to see my 'original' rheumatologist this week because if I refuse to see him, they will pull the plug on me going to the UK for any further referrals. I am due to go back to St Thomas' in September and whilst I was a patient there they had suggested I see Prof Denton annually. I am happy with that.

Now then, will I pluck up the courage to tell my rheumatologist how I feel on Thursday? Hmmmmmm.....


#6 Amanda Thorpe

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Posted 08 August 2011 - 03:47 PM

Hello Dee

If you don't feel up to a face to face with the rheumatologist, put it in writing and post it or leave it with him. If you do go for the face to face think out what you are going to say and make some notes, do not be dissuaded by anything he says, and don't stop until you have said what you wanted to. Remember you don't need him to turn around and agree or validate what you have said for you to be right to have said it. It's nice if we like our doctors and they like us but it shouldn't impact on our care if we don't like them or they don't like us.

Take care and keep posting.
Amanda Thorpe
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