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Words of encouragement.

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I developed sores on my fingers which progressed within a 4 to 6 day period. My family physician asked if I had gotten any concrete on me and I actually did have  3rd degree burns from concrete.


Pain developed in my fingers so I decided that as it was on my skin we will try a dermatologist. After blood tests he diagnosed me with various conditions which could be fatty calcium deposits or clotting cascade or possibly prothrombin mutation.There is no set of test that clearly define what actually caused the ulcers.


My ANA is above 1:80,  Jo,  you seem very knowledgeable how do you say that combo of numbers? My albumin was .1 low and my  Alpha 1 was .1 high all other test were in normal range. No other tests were performed. I questioned him and he suggested I get a second opinion. He upped my amlodipine from 5 to 10mg, took me off lisinopril. My legs swelled up although the ulcers were fading. 


I have never been one to give up lay down or get depressed over anything so I have literally spent the last 4 days on the internet learning everything I could and one main thing is I do not think there is a rheumatologist in existence who would bet their life on a scleroderma diagnosis. They take the symptoms and tests results and do a best guess. It seems to me there are about 60-70 physical, physiological and environmental and possibly hereditary reasons to get any of the forms of Raynaud's.


I have an entire notebook written with do's and don'ts; helpful information and 3 pages of questions for my next visit. I did have to call about getting my amlodipine put back to 5mg. The swollen legs and stiff joints were so bad in 3 days I had difficulty walking down stairs one at a time. I had a broken ankle with a staph infection but as soon as we get the ok from the wound treatment I go on Mycophenolate (an immunosuppressant) so we need to make sure staph is gone 100%  and once we get a letter to my insurance company I will go on Revatio. All of this happened within a 2 week period from the sores developing to them starting to go away and pain subsiding.


The most important thing I have learned is it's life; yes I have something but it will not define who I am. I have read 1000's of post on many website, watched videos on Johns Hopkins etc. but the point is I took control. Some anxiety, of course, when I seen some of the life expectancy charts but even then, what can I do but push on  to become as knowledgeable as possible and continue to keep my doctor updated. Since at the moment my only treatment has been the removal of lisinopril for probably 2 more days. I am measuring my ulcers with a caliper every day and recording the size. Pain has come back in full force but ulcers are still declining slightly.  I feel I have a very good grip on my knowledge of possible treatments, what to look for what to avoid etc. that I can manage this and live a normal life.


Please keep your heads up and gain as much knowledge as you can. Have your questions written down and ready to ask. Good luck to you all 



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Hi RKing,


Welcome to these forums!


Certainly a positive attitude to having scleroderma is beneficial and it is a good idea to obtain as much knowledge about the disease as possible, in order to understand the various treatment options available. As you have surmised, the average rheumatologist finds it difficult to diagnose scleroderma correctly, so we do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.


I've included a link to our medical pages on Antibodies in Systemic Scleroderma and Raynaud's, to give you some more information.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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