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Posts posted by msjess

  1. Thanks Shelley. I'm at this point still not sure what's going on. Went to see the doctor a few days ago and she thought I may be having an allergic reaction to the vitamins the hematologist put me on after my IV Iron infusion. So I'm now off those. Meanwhile, still having some itchiness, though not as intense, and incredible amount of stiffness and pain and some burning in fingers mainly. There is no rash really on my fingers or soles of feet, but I do see mottling of the color and some whiter round areas, which seems to coincide with the pains I get.


    I also had a cardiac stress test yesterday - where my blood pressure in the very middle went to 138/42? I'm guessing this is related to my neurally mediated hypotension, but now wondering if that problem is related to vascular changes in scleroderma too.


    I also have been reading about morphea? And wondering about the type known as guttate morphea. I have been noticing over the past two years or so that my arms/hands and chest are seemingly maintaining a tan year-round (although if you look up close it's more of a cobblestone appearance), and recently noticed lots of whiter spots on my arms in particular. I will take a photo and try and post it in my album later to see if you can take a look and give me an opinion. I have another call into the new rheumatologist's office to see if they received my referral yet, but haven't heard back.

  2. Miocean, I hope you're able to enjoy some of your weekend. It seems like you have more than enough on your plate, and I hope it all settles down for you soon. Try to do something just for you, something that will take your mind off from the health-stuff for a few minutes, or better yet an afternoon or so. My thoughts are with you. Keep us updated.

  3. Thanks Shelley.


    I am currently suffering with this itchy-burning in my hands and feet, and it's keeping me awake all night. Seems the prednisone isn't touching it. It feels like it's just under the skin, and I do see very tiny bubbles of skin? I have looked up dyshidrotic eczema and it seems like that's what's going on here. I finished the prednisone already so I guess it's back to the doctor for me. And I called on the "referral," and apparently the other rheumatologist will look over my chart, but it's no guarantee he will even see me. I have already had one specialist two hours away make an appointment for me - then retract it a week later, saying he thinks I just have fibromyalgia. Another one told me I just have to take an antidepressant, when I am seriously only depressed BECAUSE of all the health stuff I'm dealing with, and all the uncertainty.


    And I've since been reading a lot on the other antibodies that I tested positive for, in addition to the anti-centromere ones - the anti-chromatin antibodies - which are also known as anti-nucleosome antibodies. Seems there may be a subset of scleroderma that does test positive for that antibody, although I'm no expert for sure, I wish a doctor would just take my bizarre complaints seriously for once. Just one caring doctor. That's all I want.


    In my mind, yesterday, I was cataloguing my problems these past few months and all of them - from the months of pleurisy to my huge mouth canker sore to the ear pains/likely ulcers to the migraines/trigeminal neuralgia headaches (ice pick headaches) to my on-again bouts with orthostatic hypotension and my chronic gi troubles - all of it seems to come back to this particular disease. I just can't understand why it is so hard to get a doctor to seriously look at me, talk to me about my problems and come up with a plan of attack. Instead, I feel like I am treading water, trying to keep my head above, but truly not able to advocate for myself effectively. I am just so frustrated. My heart goes out to all of you who have already been here, done this... it truly is disappointing to be treated so horribly by physicians who are supposed to be looking out for you, but just aren't...

  4. 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.

  5. 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.

  6. 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.

  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. 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.

  9. 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.

  10. 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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