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nan

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Posts posted by nan


  1. Truman,

    I am so sorry to hear about what you have been going through. I can't do prednisone because of my bleeding stomach. I know it has bad side effects, but you have bad effects if you don't take it. I hope you will feel much better soon.

    Take care,

    Nan


  2. Welcome, Razz!

    I am so glad you decided to join the forum. It's a great place for support. You have a great attitude! I find that I really appreciate the little things more now too. I tell my husband and son that the sticky stuff on the vinyl floor is ok because it works the leg muscles when you have to pull your foot off of it. :) I am all excited now because the ramp is almost done on my house. I am not in a wheelchair , but the steps going up to my house are so steep my husband and I decided a ramp was a good idea. I am just getting over a 27 week stress fracture in my foot. It feels good to wear two shoes again.

    Take care,

    Nan


  3. Nina,

    Welcome to the forum! I too was diagnosed with fibromyalgia in 1998. I also have watermelon stomach and have had two major bleeds. I had that argon plasma coagulation procedure twice and so far so good( that was a year ago). I am so sorry to hear that your watermelon stomach is so severe. I can't imagine having part of my stomach removed.

    take care,

    Nan


  4. LMS,

    I am so sorry for your diagnosis, but I do know there is treatment for your problems. When I first found out that I had scleroderma it was surreal. My thoughts are with you as you start on this journey. I was so relieved to finally have a diagnosis, but I just wished it could have been something else. You have come to a great place for support.

    Take care,

    Nan


  5. Bless your heart! At one point I was positive in the bloodwork for Sjogren's. I have never had a positive bloodwork for scleroderma. I did have a high ANA. The doctor that diagnosed me at Johns Hopkins said she didn't care what the bloodwork said and gave me this diagnosis: CREST/ Limited scleroderma, Raynaud's( which is the R of CREST), Sjogren's, Fibromyalgia, severe GERD, and GAVE( lesions that bleed in my stomach spontaneously). She made the diagnosis from symptons and examining my body. I was terrified when I got the diagnosis of scleroderma. After coming to this forum I felt better. Many people on this site have been living quite a long time with this nasty stuff. I hope that you will have a good visit with your rheumatologist. Feel free to email me or private message me if I can help you in anyway.

    Take care :)

    Nan


  6. I too have GAVE. I had a major GI bleed in the fall of 2004. My hemoglobin was 6.1. I had to be transfused and then an endoscopy was done. Since I wasn't actively bleeding when the doctor discovered he didn't do any treatment. I was put on iron supplements for awhile. When my hemoglobin was steady I went off of the supplements. I had a second GI bleed in May of 2007. The doctor had told me if I bled out again I would have to have the argon plasma coagulation treatment. I had two treatments. The last one was done on June 18, 2007. So far I am stable, but my doctor said there is no cure and I will have more bleeds. The first bleed I had black stools for 6 weeks and chose to ignore. I also had restless leg syndrome due to lack of iron. The second bleed I had no black stools, but restless leg syndrome was horrible so I got my endocrinologist to check my hemoglobin. The scary thing is I feel so rotten most of the time that I can't always tell if I am bleeding if I don't have dark stools. Now I try to remember if I have restless legs, get the hemoglobin check. I too had bad stomach cramps after the laser treatments. My digestive tract has been destroyed by scleroderma is what my GI doctor told me at the last visit. I am on all the medication I can be on and I still have acid reflux and nausea all of the time. I have just grown accustomed to it. If you have any more questions feel free to email or private message me. Do you have limited or diffuse scleroderma? I have limited.

    Take care,

    Nan


  7. Barefut,

    I was told by my GI doctor and from books on acid reflux that pillows shouldn't be used under the mattress or under your head. That doesn't work. Some say it can make it worse. My GI doctor said that I had to get the headboard of the bed elevated 4-6 inches. I did it. It hurts my back, but I had to do it. It takes awhile to get used to... I used towake up coughing and choking from my acid reflux. I don't do that as much now. I am on the most medicine I can be on and I still have nausea and acid reflux during the day. It really does interfere with your life. I hope that you can find some relief.

    Take care,

    Nan


  8. Hi,

    I too have watermelon stomach. The condition never goes away, but the treatments can help. I have been very lucky in that I have only had two major bleeds. After the first bleed when my doctor did the scope my lesions weren't actively bleeding. He told me then if I bled out again I would have to have the argon plasma treatment. I did bleed out again and I had two treatments. The last one was done on June 18th of last year. My doctor told me that the treatments supposedly can last for a year, but it varies with each patient. The only way to get rid of watermelon stomach is to remove the antral portion of your stomach.

    I don't know about the hair loss going along with watermelon stomach. Feel free to email or private message me if you'd like.

    Nan


  9. Omaeva,

    I was having trouble with balance and numbness in my feet and when I went to a neurologist and he checked me out he thought that I had peripheral neuropathy. My neurologist said that it is quite likely that I would have neuropathy because it goes along with scleroderma and other connective tissue disorders. I had the nerve study done and I was fine. My rheumatologist told me that the burning and tingling can be from the Raynaud's.

    Take care,

    Nan


  10. Thanks for all of your replies. Cheryle, I don't know about the antibodies, I don't think I have ever been tested for that. I was able to get in to see a dermatologist today. She thinks my hands look great! I don't have the hardening and no open sores. For the cuts she said to use Super glue or liquid bandaid. For something so little they sure can hurt!

    Have a good day!

    Nan

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