I have had Raynauds for 20 years and have tested ANA positive only once in all that time (2001), subsequent tests have all come back negative. However after having a clear Nail Fold Capillary test in 2007 I recently had a repeat test and this time they found changes and evidence of secondary Raynauds.
Can you let me know if this has happened to you, how likely is it that you get an autoimmune condition develop in the future.
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sandraj
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Dont think anyone can really tell you. Some people have such minor autoimmune symptoms that they dont know they have it, others are so poorly it is quite obvious. It took 10 years for me to have a scleroderma diagnosis despite positive blood tests and gangrene in my finger!
Don't put it to the back of your mind. Face it and do all you can; get all the help to get better though you can't be cured (lack of sufficient research) you can be helped. You must be in charge of your health and not leave it for the NHS to initiate things. It is less likely to happen with the changes being introduced.
What do they mean by secondary Raynaud's? Did you ask them? Take charge.
I had Raynaud's at the time when there were no tests and years later was told I had Scleroderma (limited). I have had it for many years and I worked until I was 72. We need more research to understand it all. The Raynaud's and Scleroderma Association has managed to fund much research and they are presently trying to reach a million pounds to fund more much needed research. Contact them if you can help with ideas.
Thanks Zenabb, I meant put the worry to the back of my mind not forget about it. After 20 years of Raynauds, which caused us to relocate to southern Spain, it is very much something I am my family face. I am now treated in Spain on their NHS system and they are brilliant they never flinch at money for tests, etc and I have a brilliant Rheumatologist who I see every three months.
The secondary Raynauds means it may not be the main condition, but rather a symptom of another primary condition. They have explained it fully to me - in an hour long appointment.
Thanks for your help
Yes i agree to a certain extent - i often have to tell the medics what i want them to do, particularly the GP who doesnt have a clue. However its quite easy to research every little symptom and then get overly anxious which doesnt do you any good either! There's no doubt about it you have to be assertive, but i find i have to get support from these forums as i got told off by a close relative recently for basically being a hypochondriac. I cried for hours after! But they had a point too. My GP did say that autoimmune probs were the most complicated conditions to grasp by the medical profession.
I would agree about GPS in the UK. But here in Spain I am treated only by a consultant at a university hospital (not by a GP at all) so even when I broke my toe in the Autumn, it was dealt with via my consultant. I get regular appointments but then if I dont feel well I can call in to any of his regular Wednesday clinics and they will fit me in or I can call to his office on "his ward" on any day of the week and he will see me.
It is difficult for family and friends to understand and also living in Spain it is rare I ever meet anyone who knows about the conditions .... so you are right these forums are great!!
Interesting......I've had mild RAynalds since 1996 but already had one autoimmune disease which really wasn't that much of an issue.
As a triathlete, I became to ha e burning pain behind my knees and in the crook of my elbows so I went to a rheumy. They ran tests and found Scl70 antibodies. also had positive nail fold for secondary Raynalds. I was told I HAD scleroderma based on that. My symptoms otherwise in the last three years have been minor but I had no idea it could b just indication of connective tissue but not definitely, sclero. I guess we hear all different things from the docs. This happened to be a sclero specialist too, I have all tests done yearly......
Interesting to hear your experiences, they have told me if the ANA test becomes positive again it will be a bad sign ..... 1 indicator is just a suggestion 2 seems to be more certain.
Hi I'm a newbe here only posted a few times. Can you tell me what the positive nail fold test is? It has been mentioned by a consaltant that I have Raynalds. I have been Diagnosed with EDS (Elhers Danlos Syndrome) Hypermobility Type III. Connective tissue disorder. Fibromyalgia,POTS and alot of stomach problems eg digestion is extremely slow and painful... I can go on but wont!..
Hi They look at the base of the nail (where it meets the skin) very closely with a microscope to see if there are changes in the fine blood capillaries. There is more on this page ard.bmj.com/content/60/4/40...
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