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jeannie mcc

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Everything posted by jeannie mcc

  1. Me too. I'm getting intensive PT: "isomed", kinesia tape, ultrasound and hot/moist packs. L hip - trochanteric bursitis. Also tendonitis in L shoulder - is this all connected to scleroderma?!! Wow, I didn't know.
  2. Hi Jennifer, I've only been diagnosed for 3 weeks with systemic scleroderma sine scleroderma. I think my first symptom was muscle pain/weakness back in the late 90's. What finally got me the diagnosis was a pulmonary consult due to shortness of breath and dry cough. That led to a referral to a great rheumatologist and eh, voila! Do I think I am progressing? Yes. More shortness of breath, more GI stuff. Have the medications helped. Some. The prednisone helps with the pain, the GI meds with the GI symptoms. The doctors will monitor with PFTS on a 3 mo. basis and if we get clear sig
  3. Hey, Beverly and everyone, me too. I have mine scheduled for the day before Thanksgiving (a nice distraction from worrying about flaky pastry on the pumpkin pies). My GI thinks there are already strictures so he is going to dilate those at the same time. Also got a scrip for Reglan. He said to take it even if I skip a meal, so that answers somebody else's question. It was great to read the positive experiences. This forum is really supportive and helpful. Now I'm looking forward to the nice nap. Hope you are too. JJ-Knitter
  4. Thanks, Janey. I'm scheduled for a GI consult tomorrow, to see a cardiologist who is familiar with SSc/PAH sometime in the next couple of months and in 3 months another round of PFT's. The rheumatologist is hoping to see if those will give a better idea of whether or if the beast is progressing. Just on prednisone and Norvasc now, so no follow-up blood tests are scheduled. Things might change once they have a better handle on the level of PAH. Funnily enough, I'm doing the lunch thing too! I'm one of those types that wants to know everything RIGHT now, wants to know what's down the
  5. OK, big question, now that we have a diagnosis, what should we do to stay well, prevent flare-ups of symptoms and prevent progression? I'm especially interested in the last because I have the "sine" form and certainly don't want my ILD/PAH/ and GI stuff to get worse. For now I'm on a pretty benign medication regimen, but I'd like not to have to take any of the stiffer (sorry!) stuff. JJ
  6. Hi Sweet, I see an expert too. I've just recently been diagnosed with ssSSc and have had good referals too to other specialists who've had experience with scleroderma. I'd seen rheumys before when I was looking for a diagnosis and was told the high ANA was nothing to worry about~ I'm fortunate to live a 20 minute drive away from really good doctors. Good luck with finding the right one for you. Be persistent! JJ
  7. Wow, I've hit the jackpot! Heidi thanks for the links and everyone else, thanks for the info and support. I was wondering about the small mouth thing and if it was only the folks with the skin tightening who got it. You all seem to be on Cellcept - any comments on it? ;-) JJ
  8. Thanks Patty! I'm newly diagnosed and have gotten a lot of good info and some laughs (best medicine, right?) from this forum. JJ
  9. I was recently diagnosed with systemic scleroderma sine scleroderma and am having some difficulty finding out much about it, at least from an "experience" point of view. Does anyone else on the forum have the same form of scleroderma? What can you tell me about it? JJ :huh:
  10. I have the same problem and it predated my diagnosis with systemic sclero sine sclero. I have ILD and PAH and believe that the faintness is connected to these complications. I experience the near fainting and black spots before the eyes when standing from sitting and climbing stairs. What has helped is practising pursed lip breathing and pacing my breathing with the activity: breath in > move while breathing out through pursed lips. Deep breaths and a big smile! (Smiling actually helps!) JJ
  11. Me too! I need to lose about 30 lbs~ :( It isn't prednisone weight, at least I don't think so because I have not had much of it prescribed in the last year. Shame to miss out on the weight loss symptom. :D
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