Just been looking in, now I feel brave enough to let you know what has been happening. I have been unwell for many, many years. First diagnosed with crohns disease early teens. Then operations for that etc. Then arthritis etc.
Then broke back and hip about ten years ago found out I had osteomalatia now have iv drugs for that. On from that I have had all the wired symptoms and have been told that I have the sle spectrum. Also in November at clinic I was told I have now Probable undifferentiated connective tissue disease with sle spectrum. I also so have all the dry eyes, raised cholesterol due to the sle, peripheral heart disease due to sle. I have now had so many different infections skin boils etc as you all say, sunlight difficulties. The cholesterol has caused small vein disese of the white matter of the brain. Lung problems Plus everything else you all say.
I cannot work as a nurse any more so have stopped work altogether.
Happy Christmas to you all and thanks for reading in advance.
Written by
artgirl
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I really do hope you have a nice Christmas.We all hope to be well,especially around this time of year but,this desease is very greedy.I really wish uou well.
artgirl, what a lot has been thrown at you to cope with. If only others knew what many of us have to bear. Although we are all different in the ways that our condition presents, we have much in common. I hope that you are getting the best possible treatments and that you have the love and support of family and friends. Having been a nurse and helped others you deserve the best.
Hi artgirl, you have such a lot going on, but you are obviously a very strong person, and you will get through this, chin up hun, and hope you have the best christmas you can and a very healthy happy new year, take care, Mandy x
Hi sounds like you have been through the mill with your health. I too have mixed connective tissue disease following lupus SLE. I have marfan syndrome which I inhererited from my mothers side, her brother died with heart complications which then meant we were tested. I have heart and lung probs and have chest infections. I think that I have had SLE for 26yrs from when I was 15yrs and symtoms appeared slowly one by one I thought I was going mad. I lost my job 2yrs ago and everyday is a fight but it is bitter sweet to have a name for what happening to your body. I found it great to have heard from other sufferers so you know you are not alone and even thou they are not you they have similar fears and concerns so keep in touch and I hope you have a good and healthy christmas.
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