JohnQ

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  • JohnQ
    March 29, 2013 at 4:02 pm

    Recently diagnosed with CIDP and was lucky to be admitted to Swedish Cherry Hill Intensive Rehab in Seattle.  In a little over a month and a half I was mobile in both a wheelchair & walker at Swedish.  The PT/OT works and is WORK.  But then I had a relapse which I am now trying to work out of again.  But the point for the original poster, i.e., a Doctor, I’ll point to 3 of mine at Swedish, Dr Kushner (my admitter), Dr Shelly/Shelia Smith, and a musculer/skeleton specialist Dr Lee Lou (probably mis-spelled last name).

    JohnQ
    March 25, 2013 at 11:32 pm

    Sorry for the lateness in posting an update.  Complete 5 days/doses of IVIg, 2 days/doses (with one more to go) of IV Predeisone.  Seemsw to have halted the relapse.  Touch feeling improving, fine motor skills went almost to zero but now improving.  Doesn’t look like I lost all strength I gained in Swedish Rehab, so at least I’ll have something to build on.  The single thing that worries me the most is being able to quickly detect any future relapses and quickly get hooked up to halt it.  One of my Neuro Doc’s said I’ll probably be on “maintanance doses” of IVIg every 4 weeks as a preventative.

    Any thoughts from folks who have already gone through relapses?

    JohnQ
    March 21, 2013 at 1:21 am

    I am now back to the hospital side of Swedish for the purpose of 5 days of IVIg.  Will report daily any effects.

    JohnQ
    March 20, 2013 at 5:31 pm

    Yes, I am seeing a Neuro Doc’s here on staff.  I agree that I need immediate & intensive intervention.  What has now been 5 days of decline with upping my oral predisone to 4o mg per day.  Also stopped Dapsone.  Neuro Doc’s discussing w/o concensus, adding Imran.  One doc is   advising patience, give it  3 – 5 days to “Kick In.”  I would like to go back on the IV Predeisone quickly to get the shocking  effect sooner.  Am I getting too anixious/impatience?

    JohnQ
    March 20, 2013 at 1:50 pm

    Just diagnoised this Feb, landed in Seattle Swedish Cherry Hill.  Medically stabilized (5 days) and then transferred to the Swedish Intensive Rehab.  Made amazing progressive thru Feb early March and was scheduled to go home 3/18, but had a major relapse starting 3/14 and continuing to today.  It really has gotten to me. The Docs here seem to think it was caused by reducing my predasone dosage and maybe the start of a preventive antibiotic Dapsone.  The upped dosage of predasone back to 40 mg orally per day and stopped the dapsone and are considering adding Imuran.  I have went from independent to dependent and after a month plus I believe I am out of benefits and just don’t know what to do or anything –  a very scarey time for me.  Please advise (1st posting here)

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