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nan

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Posts posted by nan


  1. Lisa,

    You must have Sjogren's too! I can't imagine the pain you are in.. I hate when anything is wrong with my mouth. Your poor child!!!!!!!!!!!! It is exhausting to have a day like that. I don't think people understand what days like this do to our bodies. Please take care of yourself and your precious child.

    Hugs to you!

    Nan


  2. Clem,

    I have secondary sjogren's. My mouth is very sore, sensitive, and dry!!!!!!!!!! My eyes are super dry! My lips crack and bleed. I am fortunate in that my glands aren't involved. My joints hurt a lot and fatigue is the pits. I can't honestly figure out what is causing all of it. It could be my scleroderma or fibromyalgia. Who knows?

    Good Luck,

    Nan


  3. Nina,

     

    I too have GAVE- Gastric Antral Vascular Ectasia. I was diagnosed with it when I was 47. I am now 51. I have only had two major bleeds. I am so sorry to hear of all of the problems you are having. I see a rheumatologist at Johns Hopkins University. She has referred me to a GI doctor at Hopkins. I go to see him in December. Did I notice that you live in Delaware? Hopkins isn't too far from there, is it? If you want to email or private message me feel free to do so.

     

    Take care,

    Nan


  4. Sam,

    My hands hurt all of the time. Just recently they started falling asleep when I sleep at night. I wake up and it's a weird sensation. One night I woke up and both arms were asleep up to my elbow. I am glad you brought this up because I go to Hopkins next week and I think I will ask about it. I don't know any answers. I think you should check with your doctor when you go.

    Take care,

    Nan


  5. I have Sjogren's too. My rheumatologist did the test for tear production. My worst sympton usually is my dry mouth. My joints and muscles hurt all of the time. There is also a blood test for Sjogren's. Twice mine has been positive and once negative. I had the lip biopsy and it said I didn't have Sjogren's. My doctor at Hopkins says I do have Sjogren's, so does my opthamologist. Good Luck!

    Nan


  6. I received disability and I have CREST, but I hadn't been diagnosed with CREST when I received disability. I have Sjogren's, Fibromyalgia, a messed up right hand and a bleeding stomach. I don't think that you will have a problem as long as you have a doctor that knows how to document things. Good Luck!

    Nan


  7. Susannah,

     

    That's awesome news! I too have GAVE. I have only had two major bleeds in 4 years. My last argon treatment was June 18, 2007. I haven't heard of that procedure here. I am going to a GI doctor at Hopkins on New Year's Eve to try to get some help regarding motility and GERD.

     

    I am so happy for you. You will feel like a different person if you aren't bleeding all the time.

     

    Nan


  8. Soaring Eagle,

    I was diagnosed with Sjogren's in 1998 due to bloodwork and eye tearing test. In 2006 more bloodwork was done and it didn't show that I had Sjogren's. I had a lip biopsy done in 2006 and that was negative. Also in 2006 I finally went to Hopkins and the doctor there said she didn't care what the tests showed, I had Sjogren's. I was also diagnosed at that time with CREST or Limited scleroderma. This past June my bloodwork was definitely positive for Sjogren's. And guess what I am trying to say is, if I had to do it over again I wouldn't have done the lip biopsy. It's not that bad, but it's stressful to watch them cut open your lip.

    Good Luck!

    Nan


  9. Lin,

    Disability is not that hard if you have a doctor that knows what they are doing. Also, I posted information about autoimmune diseases that has been passed to recognize scleroderma as a disease that can cause a person not to work. I am ashamed to say I can't remember the name of the document, but I think Truman said she used it when she sent in her paperwork. I was turned down the first time, but appealed it. I was examined by one of their examiners and got it the second time. I would think with all of the difficulties you have had with your hands that it wouldn't be a problem. I think you should go for it. Private message me if you want. Do you have pictures of your fingers with the ulcers? If not, get some.

    Take care,

    Nan


  10. Hi,

    I was diagnosed with Sjogren's and Fibromyalgia in 1998. My rheumatologist at that time said that Sjogren's wasn't a big deal. Yeah , right! I no longer go to him. I was diagnosed with Scleroderma in 2006. I think I have had it longer than that, but I was harder to diagnosis because I don't have the skin hardening. I find that everything being dry really affects digestion.. My poor GI tract isn't too great. I notice that you started with lung and GI involvement. I can't use a lot of the dry mouth products because the aftertaste gives me acid reflux. I take 30 mg. evoxac three times a day. That does help. I use hypotears, sometimes 6 times a day. I also use restasis. Feel free to pm me if you have any other questions. It's encouraging to see that you're still kicking after 20 years with the diagnosis of scleroderma. I can't believe that you still work. I am impressed.

    Take care,

    Nan


  11. Debbie,

    Welcome to the forum! I am so sorry to know that you lost your husband. That must be horrible! My husband is my rock. I too have CREsT, Fibromyalgia, and Raynaud's. I am sorry to hear of your diagnosis. You have definitely come to the right place for support and information.

    Take care of yourself,

    Nan

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