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Posts posted by nan

  1. Hi!,

    The Scleroderma center at Hopkins wouldn't see me. My bloodwork is within normal limits and I have no skin manifestations. I do have Raynaud's, increased capillaries in the nail bed , watermelon stomach, GERD, and horrible time swallowing. I am going to see Dr. Saleh at the Good Samaritan Hospital. It is where the rheumatology department is for Johns Hopkins. I go next Wednesday at 1 p.m. They wanted me to come today. They got in touch yesterday. Hopefully, she will be able to figure some things out.


  2. Janey,

    Thanks for giving me the link to Raynaud's. I will take a look. As far as GERD, right now I am eating 6 small meals a day. I try to watch what I eat. But at this point I feel lucky if I can get it down with no pain. I had an esophageal yeast infection last winter and it was so painful to eat that I lost 18 pounds. I am 5'81/2 inches and weigh 118. I feel so bloated and it hurts so much to swallow some times. I had a really bad spell last weekend . I go to see my GI on Friday. He essentially told me last time that if I have Scleroderma this is what I will have to deal with. The GERD got worse once I was diagnosed with watermelon stomach. I think the spontaneous bleeding is what makes me feel nauseous all the time. I can't wait to get to Johns Hopkins and maybe they can figure some things out.

    Thanks again,


  3. Janey,

    Thanks for the information. Last Friday my blood pressure was 85 over? He couldn't find bottom number. It's usually about 60. I probably couldn't take medicine you took because I have a big problem with GERD. I am currently on three meds for that. Oh Well!



  4. Denelle,

    I know that when I had to take an extended period off from work I spoke with the Benefits/Compensation department and they were wonderful! I was a school teacher. I never made it back to work, but I do know that I couldn't have figured everything out without their assistance.

    Good Luck!


  5. Helen,

    Welcome! I am so sorry to hear of how fast yours is progressing. I am somewhat new to this sight too. I am waiting to go to Johns Hopkins Hospital to see if they can figure out what is wrong with me. The fatigue is awful. I also have Raynaud's and lesions in my stomach that go along with Scleroderma. My rheumatologist also said that my nailfold capillaries give the appearance that an autoimmune disease is present. My bloodwork from Feb. came back within normal range. Who knows?

    I have a friend that lived in Australia for a bit and loved it. I will think good thoughts for you and I am so sorry you are having to go through all that you are going through at this time.


  6. Michelle,

    I have had to have several gum surgeries. I don't have a definite diagnosis yet. At one point I was weaklly positive for Sjogren's which causes dry mouth. My gums are receding, but I have never heard that it had anything to do with Scleroderma or Sjogren's. I am unable to take medication for my Raynaud's because most of the medicine causes the blood pressure to lower and mine is already 80/60. I have lesions in my stomach that spontaneously bleed. I am on 3 different medicines for that to keep me from becoming anemic again. Best of luck with your husband!


  7. Still try to get disability even if it is limited. When I got it I didn't even know that I might have scleroderma. I had Fibromyalgia, Raynaud's, watermelon stomach, Sjogren's and my right hand had shrunk because of hand surgery. If your primary care physician does strong enough wording you should have no trouble. Go for it!!!!!!!!!!!!!!!


  8. Patty,

    I am so sorry to hear about your latest problem. I too have that problem. Usually an over-the counter fiber caplets(6 a day...you can send me a private message if you want to know the exact brand name) help, but lately they haven't been. When I had to get a colonoscopy last April I did the prep the day before and was supposed to have the test at 9 a.m. the next day. I hadn't even started having any bowel movements. The doctor gave me some more stuff and I finally was able to go to the bathroom and do the test the next day. I am going to have to go to my GI about my horrible heartburn, I am scared it is an esophageal yeast infection again. I will ask him for other ideas to help with bowel movements. If he tells me anything good I will let you know. I am so sorry you are going through this. It is horrible pain!!!!!!!!!!!


  9. Pamela,

    DON"T LISTEN TO HIM!!!!!! I got disability and I didn't need an organ transplant. When I got disability this is what was on my application: Fibromyalgia, Raynaud's, GERD, Gastric Antral Vascular Ectasia, Sjogren's, arthritis, and degenerative joint disease. I had surgery on my right thumb and my right hand atrophied so badly that I don't have much strength in it. My primary care physician thinks that is why I got it. Who knows? I applied twice and it came through the second time with no problem. I didn't even use a lawyer or have to go before a judge. If your primary care physician knows how to word it you will have no problem. I will keep you in my thoughts because it was a very scary time when I was applying for it and very discouraging too. You will get it!!! Keep your chin up!!!!!!!!!!!!


  10. Thanks to all for your notes of encouragement! I just got back from a wonderful rheumatologist's visit. He was so kind and compassionate today. He still thinks going to Hopkins is a great idea. I mentioned to him that my dermatologist said that my nailbeds have been damaged by Raynaud's. He looked and said you didn't have that before on all of your fingers. I told him that he was right. It was on my pinkie on my left hand in July, but now it has spread. He said that that can be indicative of autoimmune disease and that he definitely wants me to stay on Plaquenil. I asked did it have something to do with nailfold capillary and he said that it did. He asked if I wanted medicine for the Raynaud's. but then said that he really didn't want to do that because my blood pressure is so low. Today it was 85 over , he couldn't get a read on bottom number, he said that it went down to 20. Maybe that's why I am dizzy. I also told him about fainting the morning after my flu and pneumonia vaccines. He thinks that was my autoimmune system going nuts. He wants Hopkins to let him know if he should be treating this more aggressively: Such as getting echocardiogram and pulmonary function test. He is leaning towards Scleroderma, but feels that mine won't be so bad. He said that usually if it hasn't gotten a lot of involvement in the first few years it's ok. What are your thoughts on that? I know the most common problems are pulmonary fibrosis and renal involvement. Thanks for listening and have a super day! Oh, he redid serologies today and said to come back in 6 months. Now I am just waiting on Hopkins.

    Take Care everybody!


  11. Hi! My name is Nan. I just joined the forum last night and the first thing I did was to reply to Laura's problem. I too am in the midst of doctors trying to figure out what is wrong with me. In 1998 I was diagnosed with Fibromyalgia, Raynaud's, Sjogren's, GERD. In 2004 I had a major GI bleed and it was discovered that I have Gastric Antral Vascular Ectasia(watermelon stomach) which usually goes along with Scleroderma. Last January I got an esophageal yeast infection and I am still having trouble swallowing and horrible heartburn. I started seeing a new rheumatologist in February. All of the bloodwork he did came back in the normal range. He feels that I have an overlap with scleroderma. He then said that he thinks I could have Scleroderma Sine Scleroderma because I don't have any skin manifestations. He said that the only way to get a definite or good diagnosis was to go to Johns Hopkins or Cleveland Clinic. I am waiting to hear from Johns Hopkins. My rheumatologist keeps changing back and forth as to what he thinks I have. I know it's hard when the bloodwork looks ok, but I am really frustrated. I go to him tomorrow. I have been having a lot of pain in my feet and hands! I itch a lot! The swallowing has been really bad too. I will see what he says. I am fortunate in that I was able to do disability retirement. I am 49 and I have a great husband and a 14 year old son. I am pretty lucky!

  12. Katherine,

    I applied for disability in 2004. I was denied the first time and the second time the state had me examined by their examiner and the state disabillity and federal disability came through on the second try. My cousin is a lawyer and he said to wait until after the second try to get a lawyer to save money. I never had to use a lawyer. I also had disability insurance which was helpful until the disability came through. I was a school teacher with Chesterfield County and I had 18 years experience so I had many days and could have extended sick leave. Make sure that your doctor strongly words the fact that you can't work. When I applied I had Fibromyalgia, Sjogren's. Raynaud's. GERD, Gastric Antral Vascular Ectasia(watermelon stomach). I also had my right hand that had lost all of its muscle mass after surgery. My primary care physician kept saying well it comes in waves. I kept telling her that the waves were becoming more frequent and how could I keep my job if I was missing a month at a time. Keep your chin up and go for it! I just joined this forum last night. What a blessing it is!


  13. Laura,

    I am so sorry that you are going through all of that. I was diagnosed in 1998 with Fibromyalgia, Sjogren's Syndrome, and Raynaud's. In 2004 I had a major GI bleed and was diagnosed with Gastric Antral Vascular Ectasia( watermelon stomach) which is associated mainly with Scleroderma. Last winter I had an esophageal yeast infection and I have horrible times swallowing. When I had blood tested in 2003 I was positive for Sjogren's. When I had bloodwork done in February 2006 it was within normal limits for everything. I always thought that once you had an autoimmune disease you never got rid of it. Most recently I had a lip biopsy that was negative. My new rheumatologist told me in February, 2006 that he thought I had an overlap with Scleroderma. In May when I went to see him he said that he thought I had Scleroderma sine scleroderma and not Sjogren's. He said that it was possible to have that without positive bloodwork. He said that watermelon stomach and Raynaud's go with scleroderma, but I do't have skin manifestations. When I went back to him in July with my husband to discuss Scleroderma he said that he didn't say that. He said I had Sjogren's only. Of course, I had the office notes and he had said that. He said that the only way I could get a definite diagnosis was to go to Cleveland Clinic or Johns Hopkins. I thought I was losing my mind. I am trying to get into Johns Hopkins now. I called in August, but I had to wait until I could get the lip biopsy to go. I don't like the fact that I probably do have Scleroderma , but at least I have validation as to why I feel horrible. When a doctor tells me all of my tests are negative and it doesn't really matter what you have because you just treat the symptons I get really angry. I think all of us have a right to know what our diagnosis is. Take care of yourself!