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inkedup

Appointment at Chapel Allerton

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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)

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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:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

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ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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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

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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.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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:

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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.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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!

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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,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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!

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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