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About Xenia

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  1. Hi Amanda Thanks for posting again. It was nice to hear from you as unfortunately I can't really talk to anyone in my life about this. My general practitioner first mentioned CREST back in September and since then I've found it difficult to concentrate on anything else. When I took my baby to see the doctor a few weeks ago, the doctor told me he has now changed his mind and that what I have 'is probably nothing at all'. Naturally this is ridiculous because your fingers don't just twist and become deformed for no reason. When I got home, I actually checked the General Practitioner register to see how long my doctor has been qualified because it annoyed me that he would make such a sweeping, uninformed statement like that. (He qualified seven years ago). I hadn't seen the rheumatologist at that stage so we didn't discuss CREST any further. I agree wholeheartedly with you that it is strange/worrying for a rheumatologist to dismiss CRESTpurely based on bloodwork. I mentioned that I had read some people can have negative bloodwork and he seemed to think this was impossible, in fact he looked like he had never even heard of this idea before. Unfortunately, I felt I didn't have enough information myself to be able to discuss or 'argue' it further with him. In the back of my mind I just decided this was his opinion and that if I wasn't happy or still concerned, I could get my general practitioner to refer me to the scleroderma expert on Jo's list. Why is it that I was able to read all this stuff online about people testing negative and my consultant who sees people every day with all kinds of rheumatic diseases, is a trained medical professional and he maintained something out of the ordinary needed to show up on bloodwork before he could make a diagnosis? He said he could diagnose someone with rheumatoid just by looking at them, however he could not do the same for CREST patients. (I wonder if it's perhaps because he's not an expert in this field). He reckons I have osteoarthritis (OA) and for the most part, I agree with him. Without going into all the details, basically I fit the description of OA on the NHS website. I tick all the boxes there. But then I wonder why my right wrist has always hurt and is not as flexible as my left one. Surely, OA did not set in at the tender age of 20? What sort of things should I look out for with my hands? Do you mean I should watch for them becoming claw-like? I looked for the photos of your hands but couldn't find them in the gallery. I still haven't had the results of my blood tests and am assuming it's because of the bank holidays over holiday and new year. The rheumatologist said he would write to me regarding the test results, hopefully he will also mention whether I'm to get any sort of treatment or to go back to my general practitioner. I'm going to sign off for now, I hope you (and Jo) are doing as well as can be expected, take care x
  2. Hello Joelf, Amanda, Thank you both for your messages - it was great to get your feedback before my appointment. I saw the rheumatologist today....and to cut a long story short, he thinks it's probably osteoarthritis but is doing some additional tests to rule out Crest. The funny thing is, my general practitioner thinks I'm too young (I'm 38) to have OA. The rheumatologist said he needs to see some abnormal blood results to make a diagnosis of Crest (he didn't agree when I mentioned some people test neg for it but anyway, that's just his opinion). My blood is being tested for: U&E creatinine, liver function, CK, CRP, IgG, A&M, ANA, dsDNA, FBC and ESR. Thank you Joelf for the list of scleroderma experts, I have the name of my nearest expert. Basically, I'm going to wait and see what these tests show and go from there. If they come back neg, I will accept the OA diagnosis unless I begin to experience any other symptoms. If they're pos, then I'll be back on this forum. Thanks again for your help & Happy Holidays xx
  3. Hello I'm new here. My general practitioner thinks I may have CREST and I've been referred to a rheumatologist. For the past two years, I've been having pain in my hand joints and my fingers are becoming twisted. Small nodules are forming on some of my finger joints. My right wrist has been painful from time to time (since my early twenties!) and now my left wrist hurts too. At night or in the morning, my fingers feel swollen though they don't look as swollen as they feel. Sometimes the skin feels itchy. Surprisingly, my hand x-ray came back 'normal' - I don't understand how that can be, neither does my general practitioner and that is why he has referred me. My blood tests also came back 'normal' - perhaps I'm someone who tests negative for CREST but still has it. (Test showed it's not RA either). Other symptoms are difficulty swallowing, hair loss, very cold hands and feet. I'm just wondering what to expect from my appointment with the rheumatologist on Monday. I'm worried about my fingers becoming more deformed - just doing simple household tasks can make them hurt, eg. if they are forced to bend too much in one direction. Is there medication I can take to prevent further deformity? At what point are you given meds? Thank you for taking the time to read this. Could anyone with similar symptoms perhaps share their story? Thanks