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I am rather confused and hope that you will be able to shed some light.


I saw the rheumatologist two weeks ago and at the time of my visit was having a nasty Raynauds attack. It was my second visit and he told me that he had received back the results of all blood tests bar one and that the good news was that they were all pretty normal. I asked him what in his opinion was wrong and he told me that I had limited Scleroderma, CREST syndrome which I had not heard of.


The symptoms which I had (which have become even worse inthe last two weeks) were very swollen, turgid fingers,a tightness over my hands particularly the right one which made it hard to close, loss of grip,tightness in wrists,electric nerve type pain in my arms, sensitivity to tightness of clothing, watch etc.swollen, tender feet,tenderness in face,general sensitivity all over skin,burning in elbows and knees, general fatigue, dryness of eyes and my hair seems to be dropping more than usual.


He gave me a painkiller on my first visit which was a great help and on seeing my Raynaud's in action started me on Nifedipress which is the lowest dose of Niferdiprene (as I have low blood pressure and need to build up to a higher dose) for the Raynaud's.


I went home and looked up Scleroderma and it made sense. My general practitioner agreed to refer me to The Royal Free and waited for the letter from the rheumatologist.


When this arrived it made no mention of the Scleroderma CREST. Luckily my best friend was at the appointment with me otherwise I may have thought I had dreamt the whole thing. The letter said that my bloods were remarkably normal apart from slightly raised ESR of 26 and an AST of 39. C-reactive protein was normal at <5mg/L and immunoglobulins and thyroid function were normal.


Autoantibody screening tests were completely negative. These included neg results for ANA,ANCA,DNA,ENA and Rheumatoid factor He was still awaiting results for the anti -CCP antibody. Normal creatine kinaise.


He said in the letter that I continued to be symptomatic with pain in several joints and the consequences of severe Raynaud's in my hands. Explained his starting me on low dose Nifedipine because of low blood prssure saying that he would up to triple the dose gradually.


He concluded by saying that at the present time, the working diagnosis is one of idiopathic primary Raynauds syndrome, as there is no additional evidence to support the diagnosis of a connective tissue disorder.


When my general practitioner recieved this he called me to explain that he would have to refer me to Royal Free with Raynauds as that was what was in the letter which he sent me a copy of.


I do not understand very much about the blood tests although I have looked on the internet but I am not sure of the implication of these blood signs but what look like clear physical signs. Can anyone advise please.


Also over the last 2 days my right hand has become so swollen and tight that it is causing me concern. using the computer definitely makes it worse.

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Hi, Vanessa. Thanks for your very thorough post. The NHS (UK's National Health Service for you non-UK readers) does not seem inclined to venture a diagnosis in the absence of hard clinical evidence. Since it is early in the process and these symptoms could be caused by other things, I wouldn't let that bother me. The fact that your rheumatologist is referring you to the Royal suggests that he feels their experts will be more likely to be able to judge whether or not you may have scleroderma.


I am not a doctor, but I am a patient in the NHS system who also does not have a direct scleroderma diagnosis. My symptoms at the beginning were similar to yours. The swelling in my fingers has subsided considerably, though I still have pain in the joints. After six years I have been able to get out of the several rheumatologists I see that I have 'some kind of connective tissue thing.'


I do hope you get a more definitive answer at the Royal, the recognised centre of scleroderma expertise. What is most important, though, is that the various elements of your disorder are treated effectively. In my case, I feel that the use of Plaquenil has reduced the severity of my complaints and my Raynaud's is under control. Good luck.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hello Vanessa


You are being referred to the best place for all things scleroderma, the Royal Free. I am a patient there and if anyone can determine whether or not you have scleroderma its them. Don't worry about the blood work as that is only part of the diagnostic process, there are symptoms to consider. My ANA is negative, my rheumatoid factor normal but I have diffuse scleroderma.


Just sit back and wait for your appointment knowing you're going to be in very good hands.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Vanessa


Just a thought about your Raynaud's; I also get Raynaud's & was referred to The Royal Free whereby they coated my fingertips with a substance similar to nail vanish and put them under this rather natty little machine called a capillaroscopy and it then shows all the capillaries in the area of skin at the base of the fingernail. In Scleroderma, as opposed to primary Raynaud's, it shows how the capillaries have become enlarged and disorganised as in my case and can help with the diagnosis. When you go to The Royal Free hopefully they will be able to give you a definate diagnosis and at least then you will know what you're dealing with.


I do hope this will help. :)


Kind regards x

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hi Vanessa


Sorry to hear that your hands are worse. I know just how you feel, your hand problem description could have been written by me! I'm in the middle of a 'flare up' at the moment, and my hands are siezing up and swollen.


When I was diagnosed with diffuse systemic sclero, my blood tests were only a small part of the diagnosis, as they were already showing all the ana's etc for my Lupus and autoimmune hepatitis. The rheumatologist paid attention to the physical symptoms.

Hope you get on ok.


Best wishes


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