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Everything posted by serendipitydoodah

  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
  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
  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 lik
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