My husband is home .receives his ivig treatments at home every 4 weeks ..has his rituxamab treatments set for oct 2nd round at columbia presbyterian in nyc .yes we have an autimmune specialist from columbia w have been seeing .Perm is progressive encephyelomyetis with rigidiy monoclonous ..there really isnt any literature on this disease which is so frustrating .on same spectrun as stiff persons but more rare and complex ..just want to make sure we are doing everything right as far as his treatments and if we should be doing more or going to a doctor if we can find one that specializes in this disease. Very frustrating that the FDNY is not recognizing autoimmune diseases qhen he was a healthy 60 at the time of the start of his symptoms and actually thought he was improving any help i sure would appreciate .sincerely Ellen ODonnell

He is home .He receives his ivig treatments at home now every 3 weeks ,was every 4 weeks..Perm is on same spectrum as stiff persons but rarer .Progressive encephelomyetis qith rigiduty monoclonous ..he had plasmapharesis and ivig treatment in hospital after brain surgery then had 2 rounds of rituxamab and has his 2nd round coming up in oct ..any help please

Progressive enecpelomyetis w rigidty monoclonous also believe affecting his brain stem. Currently in columbia presbyterian nyc .This is the hospital we have been using since 2021