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Everything posted by nan

  1. Alice, I too have fibromyalgia and scleroderma. I hope that you have a great visit to Hopkins. I go there to see a rheumatologist. Nan
  2. I have CREST too. Any time my body is treated for anything it does increase symptoms, but I just plan to be a lazy bum and REST when I know I have to have something done. Take care, Nan
  3. Ana, Thanks for sharing. I too go to Hopkins. Which doctor did you see? I remember someone telling me one time that hair loss can happen with Lupus. Just a thought. Nan
  4. Thanks for sharing that. I remember one post that she had her husband write after she got home. I have been thinking about her. I hope that she will be ok. Nan
  5. Hi Lynne, I too have CREST. You have come to a great place for support! Nan
  6. Dave, That is wonderful news! I am so happy for you! Nan
  7. Cher, I have Sjogren's and I have that too. Mine is actually ok right now, but when it is there it HURTS!!!!!!! I use a topical antibiotic cream on it and an saline nasal gel I have. Nan
  8. Penny, I am so sorry for what you are going through... I go to Hopkins, but now my insurance is telliing me they won't cover my visits anymore because Hopkins is out of network. Has anyone ever mentioned Ehlers-Danlos syndrome, the hypermobility made me think of it. I have CREST, Sjogren's, GAVE, GERD, and Fibromyalgia. I have digestive isssues, but not as bad as yours. If you can get into Hopkins try to get to see GI doctor- Dr. John Clark- He is awesome!!!!!!!!!!!!!!! Take care of yourself, Nan
  9. Red, I too have limited, it sounds like a Raynaud's attack. Have you hands ever done that? I guess maybe you could call the doctor and ask his nurse if you should be seen. If you go to the medical part of this forum there should be info on it. I wear gloves all the time, even in summer to prevent attacks on my hands. Take care and stay warm! Nan
  10. Cher, I am so sorry you are having so much trouble. I don't think that Plaquenil will help swollen eyelids. I know that if I forget to take it my hands get really swollen and my joints hurt more. Take care, Nan
  11. Peanut, I wasn't feeling so hot this evening so I figured I check out the forums. You have made my day! It is so great to have you back. You have been in my heart as I have read about your struggles. Keep on improving! Nan
  12. Thanks, that makes me feel better. Nan
  13. Wow! You have been through a lot of tests. I was supposed to have the manometry, impedance and 24hour swallow test done at Hopkins, but since it is out of network for my insurance they are refusing to pay. Now I need to wait until May to see a doctor locally. I am not real excited about these tests. How painful was it? I hope that you get finally get some answers. I have Sjogren's and Scleroderma and they both definitely affect motility. Take care, Nan
  14. Yes, I definitely have fibromyalgia. I have all 18 tenderpoints! I have had all of my doctors locally saying I have it and my rheumatologist at Hopkins says that I definitely have it. I do know that some doctors just say that when they can't think of anything else, but in my case they're correct. Nan
  15. I was first diagnosed with fibromyalgia in April 1998 and Sjogren's in June 1998. I was diagnosed with CREST in 2006, though I think I had it in 1998, because I had CRE at that time. Nan
  16. I don't know an answer to your question, but I just wanted to let you know that you will love Johns Hopkins. Are you going to the Scleroderma Center? I see Dr. Saleh, rheumatologist at Good Samaritan. Of course, now my insurance is saying they won't cover my visits because it's out of network. Hopkins will get you straight. Nan
  17. nan


    Sweet, Glad you got results!!!!!!!!!!!!! Isn't it a wonderful feeling? Nan
  18. nan


    Sweet, I am impressed that you can drink orange juice. It doesn't bother your GERD. I just started Miralax and like it a lot better than 6 citrucel caplets and 2 stool softeners daily and ducolax as needed. I have found that I definitely don't need the whole cap. I did a little less than 1/2 cap last night and was quite successful today. I didn't realize the side effects. I think I might try what Gareth's mom does with Gareth. Good Luck! Nan
  19. Deedles, It sounds like you might have Sjogren's too. That causes dry mouth, eyes, hurting joints. That's great that you are going to Cleveland Clinic. Good luck to you. Nan
  20. Stef, I am so sorry that you had to experience that. Get rid of that doctor and find one that will listen to you and take care of you. You are not losing your mind. That doctor is just a real twit!!!!!!!!!!!!!!!! I had a doctor ask me one time why I was on disability retirement and I looked at him and said, "Are you kidding me?" He backed down at that point. There are some wackos out there, but the good news is that there are some excellent ones too. You just need to find the excellent ones. Take care, Nan
  21. Lisa, That is great! I am so happy for you. I hope that your fingers will heal soon. Take care, Nan
  22. Sam, I am so sorry. I thought you would get it this time. Haven't you been trying since 2003? That's ridiculous! I don't think that you should give up. Does your doctor agree that you need it? The doctor can really help with how he or she words things. Take care, Nan
  23. Hi, I was diagnosed with watermelon stomach at the age of 47. It was discovered when my hemoglobin went down to 6.1. I had two transfusions at that time. When the doctor did the endoscopy I wasn't actively bleeding so he did no treatment. I was put on iron tablets and my hemoglobin went up to 14. I had no bleeds for 2 and 1/2 years. On the second bleed I got two transfusions and had the argon plasma coagulation treatment. I then had another treatment 6 weeks later. That was June, 2007. I am not on iron and I haven't had any more bleeds. I am one of the fortunate ones. I am so sor
  24. I had this testing done on my legs last year. I didn't think it was that bad. The needles didn't hurt at all, but the reaction was a weird sensation. Compared to other stuff I have had done this didn't bother me that much. I do know the doctor that did the testing on me said that many people don't tolerate it too well. I was a lucky one. Good luck! Nan
  25. Celia, I too have major GI problems. I have GAVE, watermelon stomach. I take 6 citrucel caplets daily and 2 stool softeners daily , along with 2 proton inhibitors and up to 16 Gaviscon tablets. I am still constipated and still have bad reflux. I have trouble getting food down also due to Sjogren's. I can't take the medicine you're talking about because of my low blood pressure. I tried half a tablet and I slept for 17 hours! I know what you mean. This GI stuff really wears you out. I am going to a GI doctor at Johns Hopkins on Dec. 31st. I am hoping that he will have some answers.
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