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Biomarker for Diffuse Scleroderma skin has been discovered!


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Appointment at Chapel Allerton


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#1 inkedup

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Posted 01 July 2012 - 10:16 AM

My appt went really well, they have a special Scleroderma clinic, and proper 'scoresheets' in order to assess you. They did all the usual baseline tests. They gave me lots of info I didn't know - they think my hypothyroidism and high ESR is probably due to primary biliary cirrhosis. I am also being tested for Primary Sjogrens as my symptoms are getting worse (my ultrasound shows that my saliva glands are being destroyed)They have also told me that under no account must I experience any GERD symptoms at all, so I must elevate my ezomeprazole from 80mgs to 120mgs daily. I also have tendon friction rubs in my wrist - I thought you only got this in diffuse Scleroderma. They are also going to put me on stronger Vit. D supplements as I have Vitamin D deficiency which isnt improving much. I felt really reassured that I would be 'in hand' and that they will see me again in 3 months (not the year that the consultant in Halifax expected me to wait)

#2 Joelf

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Posted 01 July 2012 - 12:53 PM

Hi Inkedup,

I'm really pleased to hear that your appointment at the Scleroderma clinic went so well. There's nothing like being treated by a medical team in whom you can have complete confidence. They certainly should be monitoring you regularly every three months in the beginning so that any problems can be swiftly dealt with.

Good for you! :bravo:

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#3 suze932

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Posted 02 July 2012 - 02:16 AM

Hi Inkedup

Your blog was great and I am so glad that you have managed to find a team that understands Scleroderma in its many guises and symptoms.

I have Scleroderma and also have Sjogrens and am going for an ultrasound of my salivary glands this week as I have loose teeth, dry mouth and eyes but they want to make sure that the dry mouth is not a side-effect of my many medications! before tackling the Sjogrens. Luckily I have been referred to the Eastman Dental Clinic, which is under the umbrella of UCL Hospital and they have already a file on me for gastric interventions so hopefully some joined-up-writing will ensue.

Keep us posted on your progress please.

Regards
Sue

#4 Joelf

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Posted 02 July 2012 - 05:38 AM

Hi Sue,

I hope that your ultrasound goes well this week and that it will enable the Eastman Dental Clinic to treat your Sjogren's satisfactorily.

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#5 Amanda Thorpe

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Posted 03 July 2012 - 08:15 AM

Hello Inkedup

How marvellous it is to be under the care of specialists, as in experts in their specialty not as in, only doctor that covers a specialty illness.

You must feel really reassured because you now know that whatever comes your way it will be treated correctly.

Take care and keep posting.
Amanda Thorpe
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#6 Amanda Thorpe

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Posted 03 July 2012 - 08:17 AM

Hello Sue

I had to laugh at the possibility that your mouth symptoms were NOT being caused by Sjogrens! Best to check eh!

Take care.
Amanda Thorpe
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#7 suze932

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Posted 05 July 2012 - 12:59 PM

Having schlepped up to UCL in London today for my Sjogrens ultrasound, it was all over in less than 5 minutes. Sjogrens Syndrome confirmed as all salivary glands unmistakably (!) damaged (whoopee!), though thyroid OK (hurrah!)and so ball back in the court of the Eastman Dental Hospital. At least Sjogrens is having a world-wide press at the moment as Venus Williams, of tennis fame, (no pun intended) has just been diagnosed with this fun condition so it may raise its profile somewhat.. Doctor asked me if I was going for the full set of autoimmune conditions - just as well I can still find the funny side of such comments.

Thanks for listening.

:emoticons-group-hug:

#8 Amanda Thorpe

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Posted 10 July 2012 - 09:44 AM

Hello Sue

Congratulations on getting a diagnosis!? Yeah it's something to celebrate around here! I hope the dental hospital can help you now and remember to keep us informed.

Take care.
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#9 allanh

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Posted 24 July 2012 - 12:43 PM

My wife has been attending Chapel Allerton Hospital for the last 12 months or so.Without exaggeration, we are very impressed with the service they provide.After having to put up with months of inappropriate treatments within a month we had a good evidence based plan of care.It is worth the long journey that we make.Another reassuring point about this hospital is that you see posters about Scleroderma everywhere.Our advice to anyone who feels that they are stuck with their treatment is to ask to be referred for further opinion, don't put up with the "come back and see me in 6 months" brigade of consultants!

#10 Joelf

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Posted 24 July 2012 - 02:57 PM

Hi Allan,

A warm welcome to these forums to you and your wife!

It's very refreshing to hear that you're both impressed with the treatment you've received and I'm glad that your wife is now enjoying a good plan of care.

I have also experienced excellent treatment from the NHS although I haven't been attending Chapel Allerton (my treatment is mainly based in London.)

Do please keep posting and let us know how your wife is faring.

Kind regards,

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#11 Amanda Thorpe

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Posted 27 July 2012 - 04:19 AM

Hello Allan

I am so glad your wife is finally getting appropriate treatment, what a difference it makes however far the travelling is. Come back in 6 months? No one should ever put up with that ever.

Thank you for passing on the positive comments about Chapel Allerton, it's helpful for others reading this forum.

Take care and keep posting.
Amanda Thorpe
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#12 Joinedupthinking

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Posted 22 August 2012 - 11:18 AM

Hello Allan and Linkedup,

I have been going to Chapel Allerton for the last 4 years and I cannot praise the doctors and nurses and support staff there enough. I now have appointments where I see more than consultant at a time! I told Professor Emery that it was good to see a bit of joined up thinking (hence user name) about this condition. The consultants all see me at the same time, they speak to me at the same time so everyone knows what is happening first hand. Impressive - I'll say. What a pity that everyone can't have this kind of treatment.

I have so much faith in these people - they have made my life so much more bearable. And as we know the symptoms vary with time - they are with you all the way though - and none of this smiling sweetly as they say "see you in six months". The timing of repeat appointments depend on how you are when they see you.

Take care - we may bump into each other some Thursday!

#13 Shelley Ensz

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Posted 22 August 2012 - 11:30 AM

Welcome to Sclero Forums, Joinedupthinking!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#14 Amanda Thorpe

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Posted 22 August 2012 - 12:47 PM

Hello Joinedupthinking

Welcome to the forums! I am so glad you're getting good care and, yes, the timing of appointments should depend on how you are not when they can fit you in. Doesn't it make you feel secure to have such good care? A number of people have said how good Chapel Allerton is, it's helpful to have patients feedback so thank you for taking the time to do so.

Please let us know how you get on with this disease, how has it affected you so far?

Take care.
Amanda Thorpe
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#15 Joelf

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Posted 22 August 2012 - 02:14 PM

Hi Joinedupthinking,

Welcome to these forums!

I'm very pleased to hear that you've received such good treatment from Chapel Allerton,and it certainly makes all the difference if you can have complete confidence in your consultants.

Please do keep posting and let us know how you're getting on.

Kind regards,

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#16 Joinedupthinking

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Posted 23 August 2012 - 12:49 PM

Hello again and thanks for your welcomes! I was at Chapel Allerton today again and had a look around as though it was my first time again and yes there is information all over the waiting room about all manner of autoimmune conditions and all about the drugs used to treat them. One of the best things is the so knowledgeable people there - they are quite happy to explain things.
You asked how I am affected - do you want the whole list? Scleroderma, Raynauds, Sjogrens, Rheumatoid Arthritis and these manifest themselves in painful joints, skin problems of various kinds, dry mouth/eyes etc, lungs damaged, oesophagus not working at all well and the rest of the digestive tract is dodgy too!! But you know what you can always find someone worse off than yourself!!! Wish me luck with a modified drug regime
I have to say that it is worthwhile travelling to get proper care - I was at another (more local) hospital where the doctor had an interest in autoimmune conditions - now I deal with experts who want to help me live as full and comfortable life as I can. Today I've driven around 100 miles but worth it! And I'm treated with respect not like some kind of hypochrondriac which I've had and I think that was possibly the lowest point for me.
Anyway take care all - off to enjoy a long weekend :))

#17 Joelf

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Posted 23 August 2012 - 01:12 PM

Hi Joinedupthinking,

I'm sorry to hear that you've been affected with so many problems through Scleroderma, but it must be a comfort to know that you're in such expert hands and are receiving top class treatment.

Good luck with your modified drug program and I'm glad to hear that your doctors treat you with respect and want the very best treatment for you.

Kind regards,

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#18 Amanda Thorpe

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Posted 24 August 2012 - 01:57 PM

Hello Joinedupthinking

There are actually many scleroderma experts in the UK so it'a outrageous that people are often mistreated by doctors who aren't. I am glad you're under expert care now, what a difference eh?

Many people here also have Raynaud's, Sjogren's and Rheumatoid Arthritis so you're in good company! Scleroderma rarely comes alone! Me, I have diffuse systemic scleroderma, Raynaud's, Erythromelalgia, Interstitial Cystisis and that's about it. Unfortunately the scleroderma has taken quite a heavy toll on my life, I no longer work and use a wheelchair when outdoors but, as you say, it could be worse and unfortunately have a dear friend is the "worse" in, it could be worse.

Take care and keep posting.
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