My husband is 43 was recently diganosed with Sysemetic Sd. He was a phone installer for a local phone company here in Montana a cat followed him into a crawl space and he went to get it out and the cat severly mauled his had he waited until the following week went to the dr. and they told him he broke his finger. His hand had swelled all the way up to his elbow by the following week and spread to his other hand. (This was the end of Jan 2012). He kept swelling knees, feet, and ankles etc. We saw a specialist in another town who tested him and said it was SD put him on mexo. This was in May. He took it until July and she told him it wasen’t working and to see a specialist in Seattle (in Oct). During this time his foot swelled I cannot even begin to explain how big it was. We saw the specalist again she said this is not part of the disease I asked if he could be put on an antibotic I felt like the cat scratches had been untreated. I don’t remember what she she put him on but for 10 days he saw immediate improvement. But then we had to wait until Oct to see the specialist in Seattle. When we did get there he put him on a transplant medicine. Mike took this till December but he lost 42 pounds and was completely be ridden. All together he has lost over 70 pounds. He could not stand, swallow and the amount of pain he was in was horrible his skin is tight and legs, hips, fingers are curling in.
I went to his local dr. told him I am not leaving until you talk to me he then stated he is a dying man, I did research found Pat Grangers article and thank god I found this website. Mike was on minocyclene for 22 days 100 mg 2 times a day we was starting to lift his legs and has been using the bathroom on his own and his appetite is so much better. 5 days ago they started the IV Clindi 900 mg 2 times a day. He just finished that and his color is much better and movement is better too. He has found a dr here locally that listened to him and is willing to do what he wants and we are so thatnkful. Thanks Maz, Margaret and the road back.org.
To those of you just starting don’t give up and those of you who have been through this thank you for posting your stories.
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