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Lori-Scleroderma Spouse

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About Lori-Scleroderma Spouse

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  1. So sorry to hear of what you are going through. I went through the same thing with my husband and his was diagnosis when he was 40. You go with what you believe and keep pushing the doctors. I found out a great deal more than I ever wanted to know about all this stuff. I was once asked by a dr if I was a nurse. I am just an elementary school teacher but I researched the daylights out of it and knew read everything I could get my hands on. Keep your chin up and help him stay positive. I would be glad to talk with you anytime. I have not been on the site in a long time but will look and see if I can send you a private message with my email address in it. I have another great friend that I met on this site because her husband had the same thing. We are great friends and good supporters for each other. Lori
  2. I am so happy for you and your wife as well as Dr. Shanahan. He needed some positive news. I think he took the loss of my husband almost as hard as I did. I agree with you that he is a wonderful person. Keep smiling and rejoicing that you are beating this disease. I know your experience will help research work toward finding a cure for this disease. Congratulations and bless you.
  3. Hi Tracy My husband was diagnosis about 2 years ago. He was 39 and self- employed. It has been a long battle but with modern medicine he has done better than we were first told. I would be glad to talk with you at an time. I fyou will send me a private message, I will give you my e-mail address and any other info. Keep all the positive thoughts. Lori
  4. HI Barry has not had that problem. Sorry to hear that Roger is having problems with his hands. Hope things are going well other wise. Lori
  5. Hi Nice to hear from you. I was thinking about you all last week. I was thinking of calling this morning, just didn't have time. Hope things continue to go well. How often does he get the treatments? Lori
  6. Hi Laura B, My son has PDD-NOS. Please send me a private message and I will give you the autism forum links and information.
  7. I just found out some research that said that children with autism were more likely to have someone in their family with an auto immune disease. I found this very interesting. Most of you know my hubby has diffuse scl and we have a 10 year old with on the autism spectrum. How many of you have also have autism in your families? There seems to be a strong link on the autism board. I thought this was very interesting. Lori
  8. THat is great news. I am so happy for you guys Lori
  9. Hi, Paul I am sorry you are discovering this disease this way. My husband was diagnosed a year ago this week. The rummy told us the same thing. We were devastated. He made us an appointment in Charlston, but we were going to have to wait 2 months. In the mean time, I found Duke. He got us an appointment there in about 2 weeks. Dr. Shanahan at Duke was much more encourging. He believes in treating this disease aggressively. He has also been very supportive. He will give you his e-mail and responds to questions very quickly. He now calls me the e-mail Queen. Although all this is frightening, stay positive, it really does help. I will be glad to talk with you or e-mail with you. We all need a shoulder to cry on sometimes. I will pm you my e-mail address. Keep smiling
  10. Hi sadie My hubby has diffuse with possible lung involvement. He had a great deal of muscle and nerve involvement. He had been on 4000 mg of cellcept daily with not improvement. His doctor then decided to try the IV cytoxan. He told us that IV was lwss toxic than oral. HE was going downhill quickly. He has seen some improvement since getting the IVIg and Cytoxan. He got the last IVIg treatment today. Hope the Cytoxan does it job. Lori
  11. My hubby is 40 years old and just met the one year mark. That may not seem much but it counts. That was our first question as well. I had read all the research on the net before we got to the spealist. The rhummy that diagnosis it was not very positive, but he gave it to us straight. The speacialist that my hubby sees now is very positive alsmost too positive. He told us that the research that I was finding on the web was old and many advances have been made in the research. He did not think the 5 and 10 year mark were still true. He also said that being able to recognize and treat the complications now had improved the survival rate. But, like I said he is too positive sometimes. He did not think my hubby would progress as rapidly as he did. My hubby now gets the Cytoxan treatment once a month to help slow the progression. We think it is working because he seemed to be doing better until his treatment was delayed by 2 weeks. He lost the gain he had made. Good luck to you and your hubby. I completely understand. This is tough on the entire family. You and your family are in my thoughts.
  12. Hi oddone You post caught my attention. My husband was diagnosed in April 2006 with diffuse Scleroderma. He was 39 at the time. He started with swollen hands in February which they diagnosed as carpal tunnel. After treatment for the ct for a month he was sent to a rhummy. The rhummy although he said he only saw about 3 cases a year he was pretty sure he knew what it was. He was exactly right. He then sent us to a specialist at Duke University. We have been very happy with this specialist, he is involved with research and is very up with latest information. My hubby's has progressed very quickly. By July he was unable to work, due to extreme fatigue and the joint pain from arthritis. He is getting the cytoxan and has one more treatment of IVIg. We have seen improvement in his skin score and energy level. I hope your hubby does well. I am sending positive thoughts to you and your hubby. Do you have children? If you ever need to talk, you can feel free to send me a private message. Good luck.
  13. Hi The only question I can answer for you is the last one. Yes they rent the scooters inside the theme park. You also can use the handicapped parking (as long as you have a sticker, which I assume you do) that is a great deal closer. THere are also special lines at all the attractions that will eliminate you standing in long lines. You can drive the scooter all the way up to the line. I hope you guys have a great time. I also responded to you on the post about cellcept. Good luck.
  14. Hi Barefut My husband got up to 2000mg/twice daily of cellcept. He was like you, he did not seem to be getting any relief. He stopped the cellcept andstarted Cytoxon and IVIg in December with great results. After the first treatment his skin score dropped and he had more energy. He is scheduled for his third treament the first week in February. The cold does still bother him, but I think he is doing better. He has actually started going to the gym and doing just a little of working on the machines. THat is a big improvement. In NOvember he didn't even leave the house without me. Pat sorry for the bad news about cellcept but I have seen it work for less severe cases. He progressed very quickly and his rhummy decided that we needed some very aggressive treatment. Good luck and you are in my thoughts. Lori
  15. Hi We went to the sclero dr today and asked him about this. He said that there has always been some mention of that, but he did see any reason for alot of concern. He suggested that might want to take a calcium a day. Lori
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