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About Ashley1100

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  1. Hey all, I saw a scleroderma specialist yesterday; he was on the list of scleroderma specialists in the U.K. and told me he's involved in the UK scleroderma study and research group and specializes in connective tissues diseases. He was lovely and very patient. He said that I do not have Scleroderma. He checked my nail beds and said they were "perfectly normal". He said my cold hands and feets are not Raynaud's if they have no color change. And he referred me to get my lungs and heart checked just to reassure me (I'm not sure when I'll have them checked). He also took a lot more bloods. He was made aware of my body pains and acid reflux / IBS symptoms but kept reassuring me and sent me on my way. However I forgot to show him the tiny red dots on my lip, I have four. One is much bigger than the rest and my general practitioner told me it was a dilated blood vessel. So I'm automatically assuming it's Telangiectasia. So now I'm freaking out. Basically he told me I do not have Scleroderma because my nail beds are fine and I have no Raynaud's. He said my centromere antibodies could be negative in the future. But he also said the lab runs very accurate tests and only reports moderately high - high levels of antibodies (so that means I obviously didn't have a low titer). He said I could possibly develop the disease in the future, but it's very unlikely. But I've read countless medical papers saying that ACA does not exist in healthy people. That and my vague symptoms, along with what I believe are Telangiectasia on my lip. I just don't see how I don't have limited Scleroderma. I'm terrified to get my lungs and heart checked. And I'm kicking myself for forgetting to show him my lips. Should I trust him and his word though? What do you think?
  2. Hi guys, thank you so much for your replies. I'm going to see a consultant who is on the list of specialists you sent me. He's suppose to be good; however his trainee was the one who saw me the first time. So I'm hoping that doesn't interfere with anything. I'm hoping he knows his stuff and will look at me further and LISTEN. I will fight to get my organs checked out even if I can't get a diagnosis. As for my mental health, this has been an issue since my early teens and I do have anxiety meds for when needed; but I try to avoid taking them a lot because they are addictive and build a tolerance quickly. I had my OCD and anxiety under control until all over this and now it's just absolutely unbearable. Can you guys answer me some questions? How long have you had the disease? What did your specialists say about prognosis? (I know some of you aren't seeing specialists though) What type of internal involvement do you have and is it serious / how long did it take to develop? How do you stay positive and stay away from the internet? Thank you guys again, I'm just so scared.
  3. Hi all, I just turned 21 on the 11th, and I'm in the process of seeing what's going on with me. I've been experiencing bone, joint, and body pains, weird skin rashes, and IBS symptoms for years now. I'm in England studying abroad and my general practitioner here thought it might be autoimmune. I'm in the process of being tested etc. Well to my worst fear, I tested positive for ANA/ACA (centromere) and was told that was highly correlated with CREST. I have severe health anxiety and OCD, so I've sent myself into a frenzy by researching, joining forums, etc. The thing is, the trainee specialist I saw was so dismissive because I have no skin involvement. So she sent me away. I'm going back on Tuesday to see her head consultant to defend myself. I just want my organs checked, etc. I'm so scared I won't make it to even 30 years old. I'm so so scared because I have no answers and don't know if my organs are already involved or anything. and I can't stop having panic attacks and crying. Is it true, is this disease a death sentence? I'm so young and haven't accomplished much at all yet. I can't deal with the anxiety and the scary stories I'm reading about lung involvement, death, etc. Please help me.
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