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About serendipitydoodah

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    Michigan, USA
  1. I saw my primary care doctor this morning because I had discovered an abnormal discharge from my left nipple this week. I've had itching in the same nipple for about 6 months now and I've also noticed some pigmentation changes in that area as well. The doctor found some blood cells in the discharge and is sending me for a mammogram, ultrasound, and MRI and then on to a surgeon for a biopsy. I was wondering if this could be scleroderma related. Has anyone been through a similar experience?
  2. Has anyone experienced costochondritis? I came across this in the "skeletal involvement" area of the symptoms listed on the ISN site. I was looking up some pain I've been experiencing in my ribcage area and I'm wondering if it could be costochondritis. My lower ribs (on both sides) have been tender to the touch for months now. I've also been experiencing an uncomfortable popping sensation on occasion when I get to laughing too hard. It usually only happens about once a month and has just been an annoyance but not too bothersome. A couple of days ago I felt the popping happen when laughing and then found I had a sort of stitch in my side and was breathing shallow for the next 10 minutes. I laid down on my back for a little while but continued to get stabbing pains every few minutes. I turned over and got the same pain. When I stood up I started feeling normal again after about half an hour. The ribs continue to be tender to the touch but no worse than before. I'm wondering if this was a one time occurrence or if this will continue to get worse. If this doesn't fit the description of costochondritis, does anyone know what it might be? Thanks, Lesley
  3. Well, the spotted look has decided to settle in and make itself at home. There's definitely something going on with my skin. I have a dermatologist appointment on May 1st and I think it will be good to know for sure if what I'm seeing on my skin is related to scleroderma. If it is, then I will probably ask for another round of internal tests to be run in 6 months or so. The skin changes are widespread and numerous so it worries me a little that things might be changing internally as well.
  4. I got the referral to a sclero expert with the full blessing of my primary care doctor! And to think I was even worried. The doctor is faxing over the appointment request and all the supporting lab work, files, etc. Now I just wait for the U of M people to call. I'll try my best to be a patient patient.
  5. Thanks, Shelley. I printed the checklist (I can check off 6 boxes) and will be sure to arm myself with as much documentation as I can. Since I'm new here, I'll add a little background information to this post. I was "diagnosed" with scleroderma by my primary care doctor in January of this year. In the previous months I had come to him with Raynaud's, a sore throat that lasted 3 months, and a random swollen ankle that I couldn't walk on for 2 days. This prompted some blood work, which came back with an ANA 1:1280 with a centromere pattern. He ordered baseline tests for heart, lungs, kidneys, etc. and also referred me to a rheumatologist. The rheumatologist initially told me I have CREST and then at the next visit a month later told me all of my symptoms were related to stress and she wasn't even sure if I had scleroderma. I think this was because the tests on all my internal organs looked good and because she couldn't see any skin symptoms (but she wouldn't even look!). In general, our personalities clashed and I asked my PC doctor for a referral to a different rheumatologist, with whom I've yet to setup an appointment. My medical history also includes a year or so seeing gastro doctors about mystery abdominal pain near my belly button. The pain was of the worst variety I'd ever felt and they couldn't figure out what was causing it. The best way I can describe it is that everything would "lock up"; like I had an obstruction. I went thru the battery of gastro tests only to find minor reflux, one benign polyp, and biliary dysfunction. They removed my gall bladder and that helped, but the pain never completely went away. I was referred to a U of M gastro specialist who diagnosed IBS and functional dyspepsia (motility disorder). I've had symptoms of Raynaud's for many years but it never bothered me much until this winter when it started getting severe. I also think I've had some skin involvement (thickening) for years without knowing what it was. For at least 10 years I've had tendonitis in my left shoulder/back that quite often gives me trouble. I've also had (starting at age 5) surgeries on my hands to release caught tendons and I periodically get steroid injections from a hand specialist to treat tendonitis in my fingers. I think I deserve to see a sclero expert and I hope my doctor agrees! Thanks for the group hug. It's been a long week of cold temperatures and I sure needed it. You guys are the best!
  6. I got in touch with a scleroderma expert center listed on the ISN SCTC list. They told me the intake process was to have my primary care doctor fill out a referral form. I scheduled an appointment with my PC doctor for April 4th. I was wondering if anyone has had trouble getting their PC doctor to refer them to a sclero expert? I fear that I'll go to the appointment and ask for the referral only to be turned down. I know I'm jaded from my recent experience with doctors not listening to me, so I'm probably fretting for no good reason.
  7. Thank you for the warm welcome and for the feedback and advice! It feels great to get a little reassurance. Sounds like a sclero expert is something I should look into. I looked at the link on the ISN home page and found 2 references for my state for sclero experts. Back to work now... more posts to come now that I'm not a lurker! ;) Cheers, Lesley
  8. Although this is my first post, I've been lurking for a couple of months since my diagnosis. I have to say that I'm impressed with the many wonderful people on this site and I'm so glad I found you! My diagnosis came after Raynaud's, joint swelling, and an ANA 1:1280 with a centromere pattern. I've seen a rheumatologist 1 1/2 times (I walked out in the middle of my second appointment - but that's a story for another post). I've reported muscle aches, extreme fatigue, periodic facial numbness, and swollen and red hands to my rheumatologist and primary care doctor but they're treating me like I'm over-reacting to my diagnosis and, I don't know... making things up? I'm going to look for a second opinion soon, but I'm enjoying a break from doctors after an initial round of systemic testing (which looked good, by the way). I also plan to see a dermatologist soon. Now to get to the actual point of this post LOL! I truly think that I'm developing some skin involvement, but no one else seems to be able to see it. The weirdest part is that some days it's very obvious to me and other days it doesn't seem noticeable. I have observed that when it's very noticeable it seems to be in the cold weather and/or stressful days. The type of skin involvement I'm talking about is pigmentation changes, shiny patches, and some thick and dimpled areas. I want to know if anyone has had a similar experience with early skin involvement - where it seems to be visible one day and not the next. I'm asking this in order to keep my sanity. The way the doctors are treating me is beginning to make me question myself. In my opinion, I've had some skin symptoms for a very long time but just didn't recognize them for what they were. (How could I??) It seems to me that a disease that has been rather dormant for so many years (in my opinion, anyway) is hitting me like a ton of bricks - like I woke up a sleeping giant! Anyway, thanks for reading this. I look forward to getting to know you all and sharing our stories. Best, Lesley
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