• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
MOLEY

New member with query about Rheumatologist.

9 posts in this topic

I was diagnosed with systemic scleroderma 2 years ago and do not get much support from my rheumatologist.10 minutes every 12 months.Does this sound normal or am I just unlucky? I live in Cornwall and would love to know anyone else from this area having the same problems.

Share this post


Link to post
Share on other sites

Hi Moley - I am with my rheumatologist for about 30 minutes - longer if I have lots of questions.

 

When I was first diagnosed my doctor did not know much about scleroderma, not having had a patient with this. Give him his due, he read up on it, and spoke to specialists

 

No doubt someone will be along who can give you your nearest contact details, but here is a good place to ask questions

Share this post


Link to post
Share on other sites

Hello Moley

 

Welcome to the forums and yes there are better rheumatologists but you may have to travel to get there. Here is a list of scleroderma experts (just pick out the rheumatologists) in particular the Royal Free London which is a centre of excellence for scleroderma. I am a patient there myself and get way more than 10 minutes once a year! Get yourself referred there ASAP.

 

Most people in the early years of systemic scleroderma see rheumatology every 6 months and have and ECHO and lung function test at least every year or more frequently as necessary depending on their symptoms.

 

Don't put up with this any longer!

 

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)

Share this post


Link to post
Share on other sites

Hi Moley,

 

A warm welcome to these forums!

 

I agree with Amanda; you certainly should have a longer appointment and more support from your rheumatologist and Amanda has given you our list of Scleroderma specialists in the UK. We do recommend that you consult one as sadly many rheumatologists have very little knowledge and expertise about this complex disease.

 

As stated, The Royal Free Hospital is a centre of excellence for the treatment of Scleroderma (I'm also a patient myself) and it would certainly be beneficial for you to be referred there, albeit that it's a long way for you to travel.

 

I hope you can get better help and advice than you're receiving at present; do please keep posting and let us know the outcome.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Moley, I have had a similar experience to you having moved from Bristol to West Yorkshire -in Bristol I had excellent care. Prof. Denton from the Royal Free does a regular clinic in Bristol, so it might be worth asking for a referral to see Prof. Denton there if you can travel from Cornwall. I am in the process of asking for a referral elsewhere; I have progressive limited Scleroderma with 2 other autoimmune problems and am very unhappy about being seen yearly when my health is deteriorating. Good luck!

Share this post


Link to post
Share on other sites

Hi, Moley here again thanking you all for your comments. Since April I have been pro-active and requested to see another rheumatologist.However I have just had my lung and heart tests after being forgotten for 18 months and have also had a productive meeting with my rheumatologist and a lung specialist.I discussed the need to be seen by a scleroderma expert and am waiting to be referred to Prof Denton at Exeter.

Share this post


Link to post
Share on other sites

Hi Moley,

 

That's excellent news that at last you'll be getting the treatment you need. :emoticons-yes:

 

It's important, particularly with such a complex disease as Scleroderma, that you are very proactive in order to receive the correct treatment.

 

Do let us know how you get on with your appointment with Prof. Denton.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Moley

 

That's great news about seeing Prof Denton! When do you get your test results, I assume you mean lung function test and ECHO?

 

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)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0