Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About shari42

  • Rank
    Bronze Member
  1. shari42

    Saw Rheumy/dermatologist...kinda Scared

    Hi everyone, Thank you all for your warm wishes and advice. I think everyone's right about the diagnosis not mattering, but it is hard to explain to people what's actually wrong with you. Do you find that too? People just don't get it. Does anyone else have these Vitamin B and D deficiencies? (I know you said you did Janey). What does the increased protein mean? Dealing with this illness is like a part time job. :angry: I'm going to call the dr's today to see if they have any results. I'll definitely post if I get any back. Thanks again, Shari
  2. shari42

    Saw The Dr. To Review My Results.

    Hi Jessica, I also think the Plaquenil is a good idea. I've been on it for about 2 years. I'm dxed with UCTD, with symptoms of lupus and sclero. My ANA is positive too, they haven't run it in awhile, though, so I don't know the number. I know it was the nucleolar pattern, which is specific for sclero. My rheumatologist told me the Plaquenil helps keep the inflammation down, which I think slows the progression. A second opinion is always good, so I agree with Sweet and Shelley. When I first when to the rheumatologist, my only symptom was raynaud's related. Hope this helps, Hugs, Shari
  3. Hi everyone, I decided that maybe I should introduce myself, before I start with what's stressing me out, since we never "formally" met. In 2002, I started having terrible problems with my feet...swelling, redness, itchiness. I honestly thought it was athlete's foot...went to the dermatologist...he said that I had raynauds with chilblains and needed to see a rheumatologist because I could have scleroderma. This started a very long journey :( , through more medical professionals than I can even count, and more fear than I even knew what to do with. I was 38 years old with 2 children, aged 6 and 3. I was diagnosed with UCTD in 2004, with secondary raynauds. I finally found a doctor that I could respect and trust :) . I started on Plaquenil about 2 years ago. I also have gastroparesis, GERD, sicca complex, myalgias, joint pain, sun sensitivity, hair loss, itchy dry skin, and intense fatigue (I'm sure I'm leaving a few out :unsure: ). I take Prevacid and Procardia too. So that's me. I work mostly full time as a psychotherapist. It's really hard to go to work some days. My kids are 12 and 9 now, and I am very involved with them. That's why the fatigue is so difficult. No matter how I feel each day, I have to get up and function. Sometimes, it's really hard. I went to the rheumatologist 2 weeks ago. We had a long talk. I told him that I wanted to know what my diagnosis is, because all of these symptoms keep coming and going. He stated that UCTD is a real diagnosis. When I pressed him he said that I have symptoms of limited scleroderma and lupus, but he prefers to call it UCTD. He stated that he is treating me for both these illnesses. He referred me to a dermatologist who I saw the same day for hair loss. She said I have chronic telogen effluvium, which basically means your hair falls out faster than it can grow in I think. She ran a battery of blood tests, and wanted to do I biopsy of my ear, which has white deposits on the rim, and of my hand, between my thumb and forefinger, which has thickening. I refused the biopsies, because I didn't know how it would help. She called me at home a week later (Never a good thing when they call you, in my opinion) to tell me the results. She said, "Let's start with the simple ones first." ;) She told me I had a vitamin B and D deficiency, had too much protein in my blood and needed to have more blood tests and a 24hr test, plus have the biopsies done. I went locally to my internist, who drew the blood work, and to a local dermatologist, who did the ear biopsy, but wouldn't do the hand one, because he said I needed a hand surgeon for it, because it would be too deep. He stated the ear looked like calcification and the skin looked like fibrosis. I have to wait for Monday to find out the results. I guess I'm just scared. Sorry about running on like this, I just thought I should tell you a little about myself. Thanks for listening, Shari
  4. shari42

    Saw My Rheumy Yesterday

    Hi Sweet, I went to my rheumatologist 2 weeks ago, and I also have a Vitamin D and Vitamin B deficiency. I posted a few weeks ago about feeling so fatigued that I fell asleep at the nail salon, maybe that's why. There has got to be some correlation between these vitamin deficiencies and our illnesses. I also had increased protein in my blood. i think I'm going to post a new thread about the whole visit, b/c I'm kind of nervous and confused about what they are talking about.... Lots of hugs, Shari
  5. shari42


    Hi Lyndylou, I have been taking Plaquenil for about 2 years. I haven't had any side effects from the med, but do have my eyes checked yearly. The only thing I found stressful about taking it is that it takes about 2 months to start working.I take 400mgs. Good luck!!! Shari
  6. shari42

    I'm Just Soooo Tired

    Hi everyone, Thanks for all your support and suggestions. I do subscribe to the latte club too!!! I was thinking that some of this fatigue could be related to the 12 tubes of blood I had drawn at the dr's visit on Tuesday. Awaiting the results, will hopefully get them tomorrow. I take Plaquenil too, and that has definitely helped, but when I get a flare up, it's like I haven't slept all night. I'm going to try the Vitamin B idea. Thanks again and lots of hugs, Shari
  7. shari42

    I'm Just Soooo Tired

    Hi everyone, This fatigue is completely kicking me. Today I was at the nail salon and I fell asleep while the girl was doing my nails. I have to have wraps b/c my nails are thin. I was so embarrassed :o . She startled me, then my reaction (waking up) startled her. Does anyone out there have any remedies for this annoying, gotta close my eyes now or I'll pass out fatigue?? Thanks and hugs, Shari
  8. shari42

    Anyone With Callus On Feet

    Hi Jerry's wife, I have callouses on my feet which are secondary to Raynauds. About 5 years ago I had my 1st Raynaud's attack, which caused a condition called chilblains. My toes get these red marks (I think it's blood) that pools up. They swell, turn red & blister. It got so bad that I couldn't get my shoes on my feet. Now, every winter, the chilblains develop. When they go away, I have hardened skin, which looks like callouses. Hope you find this info helpful. I think it's great that you are online trying to help your husband. I think it's so important to have a supportive spouse, b/c this whole disease is hard to take at times. Lots of hugs to both of you!! Shari
  9. shari42


    Hi Betty, I also have gastroparesis. My results showed that my stomach emptying took 2-3 hours longer than it should (about 20 minutes). I also have GERD. They rxed Reglan for me, but it makes me feel kinda nervous and trembly, so I don't take it. On a daily basis, it's not so bad without it. I get nausea and feel full prematurely, but only during flare ups. Also get diarhea (lots of fun!!). I find that if I eat less more often, that also helps. Hope this helps!!! Shari
  10. Hi Heidi, Thanks for the warm welcome. The hardening/thickening is also traveling up my forefingers. How weird! Do you have raynaud's too? I have some thickening on my toes, which is the area most affected by the raynauds. Do you take any meds? I take Plaquenil, and Prevacid. Thanks again!! Shari
  11. Hi everyone, I have a question...does anyone have skin hardening between their thumb and forefinger? This has been happening slowly, and now my palm side of my thumbs are tight, and the lines are deeper. I am dxed with UCTD, but have a positive ANA with the nucleolar pattern, which I have been told is significant for sclero. I have been trying to look this up on the internet, but nothing specific comes up. Any ideas would be helpful. Thanks a lot, Shari