nan

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Everything posted by nan

  1. I just ordered some and I was excited to see that they donate to the International Scleroderma Network! I can't wait until my warmups arrive! Nan
  2. Marie, I am so sorry to hear what you are going through right now. I just finally got a diagnosis of Scleroderma, Sjogren's , and Fibromyalgia. I was ok with it at first. Now I am really angry and frustrated. I was screaming at my husband and son yesterday that I was sick of being sick!!!!!!!!!!!!!!!!!!!! The poor dears. They were so glad when it was time to go to my son's soccer game. They told me to stay home and rest. I started laughing and said to them that they just needed a break from me. I am very blessed in that my husband and son are very supportive. That's why I feel so guilty when I have a pity party. I am very fortunate to have them. At first I didn't think my husband understood because he wouldn't talk about it. I then realized that he was so upset he couldn't talk about it. He had researched it online and was terrified. I do hope that your husband will wake up and figure it out. I wish you lived close by, but this forum is a great support! Take Care, Nan
  3. Hi, I used to be a ballerina and I used benzoin on my blisters and it healed them very quickly. I haven't had digital ulcers so I don't know how it would work on those. Nan
  4. Jennifer, I am all for adoption! My husband and I were unable to get pregnant. I wasn't sick at the time. We adopted my son when he was 26 days old. That was 14 years ago. He is so awesome!!!!!!!!!!!!!!!!!! I couldn't ask for a better son. Good Luck! Nan
  5. Hi, I just went to Johns Hopkins last week and was told that I have CREST, Sjogren's, and Fibromyalgia. I was wondering who else on this site might have CREST. I know that when I first joined there was a question about how long people have been living with scleroderma. It's been moved and I can't find it. I am still waiting to hear back from bloodwork and urine samples. I have my gastric emptying study next week. Thanks, Nan
  6. Claudia, I asked to be seen at the Scleroderma Center, but they wouldn't see me. I went to the Rheumatology dept and saw Dr. Saleh. I really do like her. She did call her Scleroderma colleagues after examining me. I figured they didn't want to see me because I hadn't been diagnosed with scleroderma yet. Good Luck on your visit! That's quite a trip. I am only 3 hours away. Nan
  7. Hi, My doctor from Johns Hopkins just called. They must never sleep. She said that all bloodwork was fine except for ANA- 1:640. She said that was quite elevated!! Urine samples were ok. Nan
  8. Hi Pam, Last February my ANA was negative. It is amazing how the body changes! Nan
  9. Hi, I had a major GI bleed due to watermelon stomach in 2004. At that point I had been told that I had Fibromyalgia, Sjogren's , arthritis, GERD. At the same time I was having a horrible time with degenerative joint disease in my right thumb. I had surgery on my right hand in Jan. 2005. My hand didn't heal properly and now it is so atrophied that it looks half the size. When I applied for disability I had all of the above. I was denied the first time by the state and federal. I appealed it and the state had me examined by a state physician and I was found eligible. At that point my hand had started to really mess up. My primary care physician thinks that is the reason I got disability. I also have severe fatigue. I knew I couldn't do the job I had been doing. I was a teacher. I feel if my primary care physician would have use strong enough language it probably would have gone through without the appeal. She kept saying that I had had spells before and got better. Finally, she realized what I was saying. I said to her,"Who will want me as an employee if I can maybe make it to work one day and miss four?" With the mess that we have it is hour by hour knowing what I can do. Does that make sense? I hope that this has helped you some. Good Luck ! Nan
  10. Claudia, Who do you see at Johns Hopkins? Just curious. Nan
  11. Patty, My diagnosis is CREST, Sjogren's, and Fibromyalgia. I went up to Johns Hopkins last week. When she examined me last week she said she didn't care what bloodwork said I had all of the signs of Sjogren's and Scleroderma. So I finally do have a diagnosis and I am going to have all the necessary screening tests done for scleroderma. Take Care, Nan
  12. WOW! Thanks so much for all of the replies. I posted last night that my ANA titer was 1:640. My doctor at JHU said that was quite high. She called me at 8:30 last night. I am fortunate that I got disability 2 years ago so that I am able to rest as needed. I also go pool walk for 30 minutes a day. Right now I really hurt and itch and feel super tired! I tell my husband it could be much worse and that I am very lucky that my watermelon stomach has stabilized. He just looks at me and smiles. He says with your positive attitude I know you'll be ok. I have got an awesome 14 year old son and a super husband. I am very fortunate!!! Nan
  13. Hi Michael, Thanks for your note. She calls it CREST. On all of the orders for tests she wrote scleroderma as my diagnosis. Take Care, nan
  14. Irene, I am so sorry. I have never had a problem with Plaquenil. I do know that prednisone made me depressed when I was on it and wacky when I had withdrawal. I hope that you can see your doctor as soon as possible. Take Care! Nan
  15. Whirlway, That sounds wonderful!!! I am so glad that your health has improved. Please don't push yourself too hard. Happy New Year in your new home! Nan
  16. Hi, I absolutely love Dr. Saleh. I saw her yesterday at Johns Hopkins Rheumatology dept. at Good Samaritan. She told me that I have Sjogren's, Fibromyalgia, and CREST. I had16 vials of blood drawn and 4 cups of urine. I felt completely cleaned out. She also told me that I had to have a PFT and an echo. She also wants me to have some kind of test that tells you if your digestive tract has been damaged. She said that if it has there is some medicine that will help it. She couldn't believe that I was on 3 meds for GERD and still had breakthrough. She said to call her anytime and to come back in 6 months. She also feels that I am seeing a good doctor here. All I know is that I am in so much pain everything feels so tight!!!!!!!!! I ache so much!!!!!!!!! I hate the diagnosis, but it's good to finally know what everything is. I hope all of you are doing well. I will write again as my test results come back. Take care, Nan
  17. Hi Eliza, I too have Fibromyalgia and Sjogren's and I just found out that I have CREST. You have definitely come to the right place. There is a wealth of information on this site and a great deal of support! Nan
  18. For about the past month my feet have been killing me. They have always hurt, but this is a different feeling. The tops of my feet just ache and it hurts to have shoes on them. The shoes feel tight, but my feet don't look swollen. I used to be a ballerina, so I have had three foot surgeries. Maybe it's just arthritis! Does anybody else have this problem? Thanks, Nan
  19. Thanks for all of the replies!!!! I wear a good brand of shoes and they have always worked well for me. I am fortunate that I don't have to work. I think I will try elevating them a bit in the evening. I also am going to bring this up at Johns Hopkins tomorrow. Thanks again, Nan
  20. Irene, You sound a lot like me. I was diagnosed with fibromyalgia, Sjogren's, GERD, and Raynaud's in 1998. I had a positive ANA and was weakly positive for Sjoren's. Another blood test in 2003 showed the same. In 2004 I found out that I have Gastric Antral Vascular Ectasia which is usually associated with scleroderma. Last Feb my bloodwork was redone and everything was within normal range. My rheumatologist told me the only way to get a definite diagnosis was to go to Cleveland or Hopkins. I know that he can only treat the symptons, but my husband and I really want to know what we're dealing with. THE FATIGUE IS HORRIBLE! I too take Plaquenil. I didn't realize that you're not supposed to take with an antacid. Whoops! I went off Plaquenil for a month this past summer because my rheumatologist said that I could go off it if I wanted to since bloodwork was normal. I was in horrible pain! I am not going off it again. It has really helped me and I hope that it will help you too. It does take a while to get into your system. I am going to Hopkins on this Wed. I will post how it goes and then maybe you can go to Hopkins too if I find something out. Take Care! Nan
  21. Hi Dave, That is a wonderful present! My thoughts are with you. Nan
  22. Janey, My GI doctor was actually nice today. He said that he has me at the max for acid reflux medicine. He thinks that perhaps my esophageal yeast infection is back. He put me on medication for yeast for 10 days. If it is no better after 10 days I am supposed to call him and he will do an endoscopy. My last one was done last February. Nan
  23. Thanks for all of your responses. I have taken Nexium, Propulsid, and Aciphex before. Currently I am on 40mg. Protonix in the a.m., Ranatidine- 150mg. twice a day as needed, and 20mg. Prilosec in the p.m.
  24. I feel so lucky! I just found out today that Anthem approved my visit to Good Samaritan Hospital/Johns Hopkins for this Wednesday. My husband and I assumed we would just have to pay out-of-pocket. What a nice present for us! Take Care! Nan
  25. Emmie, I don't think that can be right. I get the Sjogren's newsletter and I think I read that Sjogren's will be considered a reason for disability. That's an autoimmune disease. Sorry that happened to you. Nan