Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

New member with query about Rheumatologist.


  • Please log in to reply
8 replies to this topic

#1 MOLEY

MOLEY

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 26 April 2012 - 05:39 AM

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.

#2 Cheerful Carole

Cheerful Carole

    Senior Bronze Member

  • Members
  • PipPipPip
  • 41 posts
  • Location:Scotland

Posted 26 April 2012 - 09:58 AM

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

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 26 April 2012 - 10:06 AM

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)

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 26 April 2012 - 11:57 AM

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)


#5 inkedup

inkedup

    Senior Bronze Member

  • Members
  • PipPipPip
  • 52 posts
  • Location:Hebden Bridge, West Yorks

Posted 26 April 2012 - 01:34 PM

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!

#6 MOLEY

MOLEY

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 24 May 2012 - 12:37 PM

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.

#7 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 24 May 2012 - 02:48 PM

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)


#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 25 May 2012 - 04:49 AM

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)

#9 Sooty30

Sooty30

    Bronze Member

  • Members
  • PipPip
  • 22 posts

Posted 31 May 2012 - 02:44 PM

Great news my husband also saw Professor Denton :)