blood results negative

i was diagnosed with scleraderma 35 years ago last year thing got worse so doctor sent me to rheumatologist got bloods done waited nearly a year to go back went back today and he said there is nothing wrong with me and he dosent think have got scleraderma as my hands dont look like he thinks they should he just did not listen to me where do i go from here help thanks

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  • Maybe speak to your GP I know I certainly get more help from my GP . The rheumologist I see does not seem interested in what I say I think he just wants to tick the boxes. Good luck don't give up x

  • thanks going to gp on tuesday

  • Did you have a positive SCL70 test? That is a pretty definitive test for scleroderma, and they can also test specifically for CREST, which is also Scleroderma but affects you a little differently, more skin involvement. If you live near a big city, try to go to a specialist there. Usually people with scleroderma have many specialists they see for the manifestations that arise, Pulmonologist for lungs, cardiologist for heart, G.I. Doctor, rheumatologist, etc.

    We know our own bodies best, so don't give up, find another doctor who will work with you, it can take time to find the right one, but so worth it. Good luck