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Progressive encephalomyelitis with rigidity and myoclonus (PERM): Help
Husband worked for the F.D.N.Y and was 1st responder ar 9/11 .was there that day and several days after until they came up w a schedule and woeked on that pile for over a year .In Aug. 2020 camw down w what they believed was encephalitis / w encephalopathy seemed to be making a slight recover that even neuro. doctor at columbia Pres NYC thought it could have been a viral encephalitis until jan.2021 had a seizure somewhere around that time they did a spinal tap and came up q this current diagnosis .He had anothwr seizure dec 26th 2021 .he had brain surgery feb 2022 received plasmapharesis and ivig treatment on hospital and did real well after that noq here we arw getting ivig treatments every 4 weeks at home w ivig .see lil improvement but seems to wear off by the begining of the 3rd week ..i find it hard to believe that being doqn at 9/11 had nothing to do w this being no one in his family has had this disease and from what i read q so little literature on this is that 30 % hereditary and 70% enviormental and toxins ..someone please help .i feel helpless for my husband and dont know what to expect and if there are doctors that are more familiar w this disease .another question is if so rare rhen hoq my daughter went onto a 9/11survivor facebook page and found at least 3 people q same symptoms / diagnosis .please if someone can help sure would appreciate it .God Bless !!
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Just want to know pros and cons of the us of cytoxin as next step of therapy being i ig plasmapharesis and rituxan have not be helping
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1 Reaction@ellenanne33 Have you had discussions with the doctors regarding the outcome of all these medications? Are they expecting a full recovery or a recovery with a good quality of life or poor recovery? Cytoxan is a very serious drug and you want to know that something good will come of it. You might ask the social worker on his unit to help you talk to the doctors. The doctors (neurologists, I’m guessing) are the best ones to know how his brain and body will react to this drug and what the outcomes will be/could be. Please don’t make ANY decision in haste! You want to feel comfortable with your decision and not feel forced into anything.
I just thought of one more thing you could do. (I was a nurse on an oncology unit and we frequently did this). You can ask for a meeting with the ethics committee. This s a group of medical staff who will come in and look at everything related to your husband’s condition and medications; talk to everyone involved and help you reach a decision.
I think I’ve probably said too much, but I hope I've helped.
Will you let me know what you think you might do?
And thank your husband for all he did. And thank you, also, for supporting him then and continuing to support him now. Thank you.
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1 ReactionThere are alot of side effects but they do believe it may slow progression ,may give him some quality of life and or go into remission .did meet w the team of neruro docs .this is our last line of treatment and i dont want to have any regrets .coukda , shoulda at least i will know we did all we could do for my husband .thank you for reaching out but i have to say they were all great w our meeting and if there is a glimmer of hope then the rest is in Gods hands ..
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1 Reaction@ellenanne33 I’m so glad that you had positive meeting with the neurologists. That is THE key to good care!
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1 ReactionThanks for the input !!!!Now i pray it helps my husband !
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