Has anyone ever heard of anyone with sclerosis going into remission. I know this can happen with some CTD . We don't know yet what type of scleroderma my daughter has, like I said she has raynauds , 1 bad episode of severe joint pain no other discernable symptoms, when we saw her GP he took me aside after I'd asked for tests and asked me did we really want to know, as it could affect her insurance for holidays etc. Well she's been abroad last week, I got quote of 5.90 without declaring her condition and exactly the same cost when I declared it. The light at the end of the tunnel seems slightly dimmer, she hasn't cried for 4 days and I'm down to 5 times, worst time is morning I wake up and for about 5 seconds I'm ok then it hits me like a brick. Does anyone know of support group meetings in the north west manchester or Liverpool area. I'm sorry for rattling on and on but I feel so helpless x

6 Replies

  • Who cares about holiday insurance being affected? You want to know about your daughters' health. I have never heard such a stupid remark from a doctor or anyone.

    He probably didn't want to do the tests because the NHS has told doctors to save money. My doctor used to be like that. I could hardly walk by the time I was diagnosed with Scleroderma but my doctor told me to take Ibuprofen and "see how it goes" . I have moved to another area and now have a different doctor and they say I have to have a blood test every month because I take Mycophenolate, my old doctor never made one test.

    So, I think you should go ahead and get every test you need. We only have one life.

    I do not live near you so I cannot give you any help in that area. I hope you get the help with tests that you need.

  • like you Irene the first consultant i saw dismissed me and told me i hadn't got scleroderm or Raynard's so as i got worse i did my own research and then was refer back to another consultant. This time he was brilliant and has done every thing he can possibly do to help me sent me to the London Free hospital to see a Professor Denton and his Doctors and nurses and i cant praise them enough.Like you I'm on Mycophenolate and a load of other medication and have to have blood test every two weeks. at the moment i am not to bad apart from Raynard's the cold weather doesn't help. so we don't take no for an answer.

    Roll on spring

  • I can't believe a Gp would say that, obviously doesn't have a clue. I can only discuss my own experience & symptoms etc. I don't know if it can go into remission but there are periods when it isn 't too bad. I'm most vulnerable in the winter or cold weathers, stress & anxiety makes it worse. I am going to examine my diet this year as I was given advice that this can dramatically improve quality of life. I also have acupuncture, see a chiropodist & occupational health have assessed me for various gadgets. I consider my scleroderma to be in early stages, I have skin involvement, Raynauds, joint pain, digestive system involvement & difficulty swallowing. I was told that everyone's experience is different. My symptoms are medicated and it may well be I don 't progress any further. However, my rheumy has advised me that I need 6 monthly tests to ensure it doesn't progress to my major organs and if it does they will catch it early enough to treat. I think you need to know otherwise your daughter could be at risk & to see otherwise is idiotic.

    Last year I thought I was at deaths door going to leave behind a 4 & 1 year old. It turns out I pulled through, am more knowledgable, empowered and am positive about the future. I'm even considering returning back to work & my hubby and I are off to vegas! I know my limitations and strengths and I will work with them. Life throws spanners in but don't give up on having a happy, normal & fulfilled life.

    The scleroderma society will have info on support groups. They also have a helpline, which they are probably better informed to help. I just ordered a 'newly diagnosed kit' from them too.

    Chin up

  • Have all the tests possible and be critical of doctors. This is the most idiotic comment I have ever heard.

    I have been in remission since 2001, it means that the symptoms are there but in a mild form and there is no deterioration. I live in Spain so Raynauds is forgotten, my lung tests stay stable, I have no discomforts at all. Remission is possible, mine took 5 yrs to achieve. I feel better now than 20 yrs ago, so stay positive, there is definitely light at the end of the tunnel. take care..

  • How old is your daughter? My daughter is 13, diagnosed at 7 had a 2 year remission period, it returned and she is now in remission again. She has linear scleroderma raynauds and possible mixed connective tissue disease. Health insurance wise there are insurers that will cover at a reasonable amount- insure and go are who we've used. It was £30 or so.

  • Hi Bernadette, I have just seen your post. My mother has scleroderma and I'm almost sure there is a local support group here in the NW, which you should also go to for support as well as your daughter. I will call her again later and get the details... would it be helpful to have her email address? Dunno how we can send private messages in here do you? Cheers Shaun

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