Hi, my 15 yr old son has had Morphea for about 6 years and in the last 18months his wrist has become completely 'stuck' in ulnar drift position. Having been told it wasn't related to Morphea/Scleroderma we have now been told that scleroderma has 'killed' his arm muscle and is likely to have caused other internal damage too. We have been told that MRI scans are unlikely to show this damage. He had an antibodies test about 18 months ago which showed that his disease was not systemic. Not sure what other tests to ask for... How often is the antibodies test needed? If he had kidney damage for example, how would we know? What would the early symptoms be? I'd be extremely grateful for any ideas or suggestions please. X

6 Replies

  • Y ou ask difficult questions to answer. I suggest you ask SRUK or your specialist nurse or your GP.

  • Thanks for your response. Obviously we have asked all 9 consultants that he is under but they all have differing views as they say that my son's case is rare. I just hoped to hear other people's experiences. I'm finding it so hard to keep fighting for information from consultants and was hoping for a bit of moral support I suppose!😊

  • Where abouts are you based? Do you see a paediatric rheumatologist ? My daughter is 15 and has had linear scleroderma and morphea for 8 years. The blood tests are not always that reliable and can change. She had some positive tests initially which were positive for several years then negative last year, but doesn't have systemic disease. Thermography can be used to see active areas in linear/ morphea but again isn't always reliable. Blood tests would show if renal function is not as it should be.

  • Hi thank you for your response. We haven't met anyone with sclerodera/Morphea before so we'd be keen to hear your daughter's experiences with consultants.

    We are seen at the Childrens Hospital in Manchester but for the last couple of years have been also seen by Prof Denton and his team at the Royal Free in London, which is a bit of a treck from Cheshire! Thermography and examination of his lesions seems to suggest that they are less active on Mycophenolate which is great. Sadly the wrist situation has opened up a whole new area of interest though.😢

    Do you mind me asking what consultants said about the positive blood tests? Why would she have positive results and yet not systemic disease? I know so little but am keen to understand more! Thanks so much. X

  • I've sent you a PM x

  • Try to find a Healing Practitioner, try to locate a good Health/Food and Nutrition Store or Private Shop. A lot of Private shops who specialize in natural healings, deal with a lot of organic practices, mind/body/spirit applications are extremely knowledgeable and helpful on so very many levels with multitudes of conditions. Some of their products heal better that synthetic medicines because their products are natural and from the Earth. Dr. Andrew Weil is internationally well-known, perhaps visit his website; he's written many books, been on many TV programs through the years, and has been featured on all types of media through the years. I purchased a volume of cassette tapes on food/nutrition with his explanations having been so detailed. Deepak Chopra is another famous person in the area of high-level knowledge for various conditions and healing, perhaps visit his website too. We must venture broadly into various areas, we can couple so much to what we've already tried, with hopes, faith and maintaining a stress free body and mind as possible to gain the comforts we so desire. Blessing and my best hope to your Son's healing, along with you and your Family's future efforts and victories for conquering the ailments of your son. Very Kindly, Thelma

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