New Referral Hurray!!!

I recently went to see my rheumatologist and said that I wanted more involvement with my condition of lssc. Instead of saying that he couldn't do this (our hospital is a bit backward this way), he said he would be happy to refer me to a Scleraderma Specialist at Fazakerley hospital. At last, I might get more than a yearly visit of 5 minutes and hopefully I will be able to become more involved with my condition as requested.

10 Replies

  • Good for you! It is so important to stand up for ourselves and educate ourselves about our conditions, I'm glad your rheumy agreed with you and seen the sense of your request . Wishing you all the best.

  • I'm seeing a lung specialist at Wythenshawe for pulmonary fibrosis and have suspected scleroderma (CREST). The lung consultant says I may need to be referred to a rheumatologist. Like you I want to be involved and want to see someone who specialises in scleroderma. Does anyone know if Salford Royal or Wythenshawe or any hospital around manchester has scleroderma specialists? You've given me courage to seek out the best I can. Thank you!

  • Salford Royal has a belting specialist in Scleroderma, I can't remember her name but she was one of the speakers at the last Raynauds Conference which was held in Manchester. She is very good.

  • I believe it is Prof Ariane Herrick, at Salford Royal, sorry for belated reply I have been on holiday.

  • Hi Jinty65. I see the excellent rheumatologists at Manchester Royal Infirmary, Dr.Bruce being the lead. I have Scleroderma. I had a nail fold capilliary test to diagnose it at salford Royal,where they also have specialists in Scleroderma related problems. Hope this helps :)

  • I had problems with the rheumatologist I saw so went back to the GP who referred me for a second opinion and that was really helpful don't let people fob you off!

  • The only way mine was diagnosed was through blood tests, that is one of the reasons I wanted a new specialist who knew about LSSc. If anyone asks me what my ANA is, I haven't a clue!

  • Got some blood results today and it's pointing to Scleroderma with pulmonary fibrosis. I'm being referred to Salford Royal and I'll probably see a professor Arianne Herrick. Is that the speaker you heard Paleindian2? Dr Barry from Wythenshawe said she was an expert. I'm also being referred to either Dr Chaudhuri or Dr Colm Leonard at Wythenshawe for the fibrosis. Not sure I would have pushed it without your advice. many thanks. Let's hope the wait to be seen isn't too long. I seem to be wishing my life away from appointment to appointment!

  • Good for you! Yes thats her,she's an expert in scleroderma. Im quite happy with Bruce for now but if it ever gets any worse i'll ask to see her. Good luck !

  • Oh, three of us all at Wythenshawe and Salford Royal !!!! Prof Herrick is extremely knowledgeable about Sclero, and does a LOT of research - you can probably find some if you Google her.

    I've been to see her a couple of times (when I got really bad with my Raynauds, and was admitted for Iloprost infusion) - to be honest, I don't think Prof Herrick was too interested in me, as my symptoms are very mild in comparison to many, and the Iloprost has been my only real hiccup so far.

    That said, I am happy sticking with my Rheumy who is part of Dr Pals team at Wythenshawe (and I feel has bought into my situation and fights for me when required) although I now see him at Withington

    After my last set of bloods, he has asked my GP to prescribe me with high dose Vitamin D, as I'm deficient (apparently) and my practice nurse mentioned she was very surprised to find I'd been given them on prescription, as it's not usually the "done thing" - but as my specialist wrote to them asking them to do so, she thinks that's why they did !!! LOL

    I think that is the most important thing - is to feel that you are being listened to and supported - which I am, so I'm staying put for now :-)

    Good luck with Prof Herrick - I'm sure she'll sort things out for you quick smart !

You may also like...