In great need of some advice for my poor mum

Hi everyone - I'm new here this evening and am desperate for help... Am quickly losing faith in my mums medical team and am not sure where to turn!

My mum was diagnosed with systemic sclerosis in 2006. Unfortunately, due to a lack of blood tests (by her consultants own admittance!) she went into chronic renal failure in 2007. She had a live kidney transplant in 2008 which failed within six weeks and she has been on dialysis ever since. She has terrible problems with calcinosis and has very limited use of her hands and lots of painful open sores. It's starting to affect her legs now to and X-rays have shown the presence of calcium build up in some of her organs.

We were told that there is usually only one 'crisis' with scleroderma and that only one organ is usually affected (in this case her kidneys) however, last weekend she was rushed into hospital and ended up having emergency surgery to remove part of her bowel! The pathologist has advised that it was the scleroderma which caused a blockage resulting in a perforation.

Understandably my mum is becoming more and more depressed with the situation and I feel like all her doctors have run out of ideas on what to do next and that they are giving up on her! I really don't know what to do now!

Sorry for the long post... Thank you in advance for any advice!

Kirsty

11 Replies

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  • You really must put your foot down.!!!. Have a look at the scleroderma website for a list of sclroderma specialist in your area and insist on getting an expert for your mum.

    Good luck Kirsty

    Sandra

  • Thank you very much Sandra! We have tried our local consultants - I think I may have located a team in Bath who specialise in connective tissue diseases like scleroderma. I just need to sort out getting a referral. It's just becoming so difficult to keep her positive when she is deteriorating. She is just 47!

  • How awful. She is so young. You must also be very young to have to deal with this. Do you have any other family to help you? I hope your mum feels better soon.

    Sandra x

  • Thank you! I am 26 Sandra and my brother is 22. We have our nan and grandad here but the rest of our family stayed in London after we moved to Devon with Mum. She's so restricted now it's just hard to keep her positive while we try and get her some more help.

  • My goodness I am so sorry!! She really needs expert advice. I am under Reading rheumatology and I have got to say they have been fab. My diagnosis has been inconclusive and complicated but they listen well and within 9months I have had a semi diagnosis, all major tests done including MRI and a treatment and monitoring plan in place. Please keep pushing and fighting for your mum.

    Wishing her health, recovery and fighting spirit against this awful disease. Much love.x

  • Thank you very much! I have managed to contact the specialist team in Bath and am working on getting a referral from mum's GP! Still a long way to go but it's a start! The news of finding a new specialist also seems to have given her back some hope :)

    Best wishes to you too! x

  • I went to a scleroderma conferece in Bath earlier this year soon after I was diagnosed with Sclroderma. The doctors seemed very knowledgeable. Im sure your mum will be in good hands there. It shouldnt take too long for a referral from your GP. Keep pushing if you dont hear soon.

  • Kirsty, so sorry to hear that your mum is really suffering. How are you and your brother doing? Contact prof Denton at the Royal Free in Hampstead. The team there are brilliant and have so many tips and ideas that other rheumatologists aren't aware of. They sorted my calcinosis infections out and offered advice on alternative treatments and drugs. I hope your mum improves and becomes more comfortable. And I also hope that you and your brother get the advice and support you need too. I'm 39 and have had SSc since I was 12 so know that it's all about managing the condition and the symptoms to maintain some sort of normality, for.me and my family. Good luck and all the best. Claire x

  • Thanks very much Claire. we are all ok at the moment, Mum is recovering well from her emergency op and her GP has agreed to refer her to the specialist Connective Tissue Diseases Team in Bath. Mum has seen Prof Denton several times but unfortunately him and his team have not been able to help. It's definitely the calcinosis that's causing the most problems at the moment though I think - her hands and arms are so bad that she really does struggle sometimes with managing to do things herself but she hates being faced with a lack of independence and this makes everything seem so much worse x

  • Just wanted to post an update on Mums case! We have now seen the specialist team at the Royal National Hospital for Rheumatic Diseases in Bath and I have to say we are now feeling much more positive! Dr Pauling was amazing. He listened well and came up with new suggestions for treatments - things we have never heard of before! He said that Mums calcinosis is the worst case he's ever seen BUT he thinks he can help.. It's such a relief!

    Kirst

  • Oh yeay! So happy for you all. Let us know how your mum gets on, I've been thinking of you all. Good luck :)

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