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Everything posted by msjess

  1. Thanks everyone. I appreciate the input. I went to my primary care provider two days ago for my itchiness all over, and she put me on 6-days of prednisone. She "thinks" it is due to mold allergy, but also has put through another rheumatologist referral to another one in my area. (Last time, he wasn't accepting patients so I doubt it'll go through this time either). My former rheumatologist just sent out mail saying he's leaving the area, too, so even if I wanted to go back to him, I couldn't. My primary won't do any of the ANA testing on me either, which is what I had asked about before she said she'd do the referral. I really want to get a second round of testing done, to either validate the previous testing or give me some peace of mind... I don't know, it just really bugs me that I'm kind of stuck in some limbo here. I really do appreciate getting a chance to come here and read the information here.
  2. Oh, and another thing, I've recently dug up a few photos of my grandmother on my father's side. She had Crohn's disease, and from what I remember it's likely she had either CREST or scleroderma. Her hands became incredibly taut and shiny and she was eventually unable to knit any more. Also, she had many issues with skin thickening and her feet. I will try to add a photo to that album if I can scan it.
  3. Thank you miocean for your reply. I am going to attempt to post a couple photos of a few "symptoms." I've actually added them to an album on here, at this link. MSJESS Photos I have since noticed bumps, small bumps on my hands, some toward the bottom of my fingernail, and some on the inside of my finger towards the base. My hands and feet lately are insanely itchy, and I do wonder if this is part of a dermatitis that may be new for me. I also seem to get really itchy after sun exposure in general. I've been to my doctor but haven't brought up my concerns again - I really don't want to have to go back to the first rheumatologist I saw last year, as he was just incredibly rude. But, if this keeps up, I will push to have all my ANA test repeated for peace of mind. I really don't know if I should pursue this or the possibility that I have lupus again with the doctors. I'm just overall really frustrated by them all, and their lack of knowledge about autoimmunity.
  4. msjess


    From the album: Jess - no definite diagnosis

    Both feet are cracking at this time. No lotion is stopping this from continuing.
  5. From the album: Jess - no definite diagnosis

    I've had these callouses forever. I wear comfy shoes (Crocs) and nothing rubs. I try creams but nothing seems to help.
  6. From the album: Jess - no definite diagnosis

    Have just noticed some little tiny skin colored dots on my fingers. At the same time, hands (palms and fingers) and soles of feet are incredibly itchy, almost burning feeling.
  7. It's all good. I understand Shelley. The main concern I have at this time is that ANA and subsequent testing, which showed my anticentromere antibodies at 123 (I dug out the papers today; the range was 0-100), and whether these antibodies show in persons who do not have CREST. If they do, then I am happy to have that mystery resolved and I can worry about my two boys and their health instead of mine, ha. I am just still mystified at the whole ANA/antibodies testing and there are still concerns on my part as to whether I have lupus. Before that testing, I was just fine dealing with my myriad of bizarre health problems as they each appeared, but if some of them are part of a constellation that identifies a definite disease process going on, then I want to be aware of it and be proactive so that I can be around as long as possible. :) Again, thank you for your advice. It is helpful to be able to come here and learn a bit more about this autoimmune illness.
  8. Thank you all for the advice.
  9. One other thing, I've also this week re-started gluten free diet. Although I didn't test "positive" for celiac antibodies or on the biopsy, I know I felt much better when on gluten free two years ago. And I just noticed there are connections between gluten/celiac and also scleroderma and Hashimoto's. Very interesting.
  10. Thank you all for your responses. I have a doctors appointment set up for this week, but am not sure if I should address this issue. I feel like a hypochondriac sometimes, I have so many complaints about my health. My appointment this week is because I have orthostatic hypotension and sometimes black out upon standing. This month has been worse than others, so I am asking for a referral to a cardiologist. I also have had horrible luck with rheumatologists since my testing last year. The rheumatologist I first saw was incredibly rude, and I didn't have any better feelings about the second opinion. Both appointments I had to wait 4-6 months to even get in with them, because that specialty is so rare in my area. Since writing initially to you guys, I have noticed some callouses on the palm of my hand, which I am not sure where they came from. Also, I have many many callouses on my feet at the moment. Are extensive callouses (not related to hard physical work) a sign of scleroderma/Crest? I also have an unexplained bump on the outside of my right wrist, which has been there for about 5 months. When I showed the doctor a few months back she said it was probably just a ganglion cyst? Another thing, I have terrible carpal tunnel which first showed up in my mid-20s, and that was back when they first said I had fibromyalgia as well. All of this is just so overwhelming some days, I just deal with the symptoms and don't even bother mentioning them to my primary any more.
  11. Hi folks, I hope it is ok that I joined, as I have a few questions about diagnosis. Currently, my only diagnoses are hashimoto's thyroiditis and fibromyalgia. A year ago, my GI doctor ran ANA testing on me, which turned out positive 1:640, and I was sent to a rheumatologist for evaluation and more testing. His tests showed extremely high anti-chromatin antibodies and just over the range for centromere antibodies, along with ss-DNA antibodies. At that time, I was unaware what the centromere antibodies were, and hadn't thought much about them for the past year, but as I read more and more I wonder if centromere antibodies are found in people who don't have CREST. The rheumatologist said I probably had drug induced lupus at some point, and that was the reason for the high chromatin antibodies, however he never really addressed the centromere antibodies. My symptoms to date: A long history, going back to childhood, of really cold hands and feet... sometimes they turn colors or get really hot after any prolonged exposure to cold. I'd say my nose, ears and face are somewhat affected by this sensation too. I figured I had raynaud's phenomenon but didn't know much about it... later I attributed it to my hypothyroid. Other miscellaneous symptoms, which haven't been attributed to my thyroid, include gastritis/duodenitis and IBS pains; difficulty breathing at times, typically seasonally in spring and summer, with last summer topping off with chest pleuritic pain that was never explained; extremely dry hands and feet; peripheral neuropathy of unknown reason; orthostatic hypotension episodes that sometimes lead to fainting. I also have had a year's worth of unexplained "adult acne" and random red spots showing up all over my body, including face, lips, arms, hands, chest. I guess I am now wondering if I could possibly have CREST, due to the centromere antibodies, the GI problems, lung issues and possibly red spots on body? I haven't seen any sclerodactyl or calcium deposits at all. Is this something I should discuss with my primary care? Thank you for reading and for any advice.
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