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Autoimmune Diseases | Last Active: Sep 21 4:31pm | Replies (12)
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My son was diagnosed with autoimmune encephalitis 27 months ago. He is an engineer and has tried IVIG, RITUXMAB, PLASMA EXCHANGE, high dose of Steriods and Thaimine. He had no thaimine , never walked for 27 months, now he is on once a month for six months of Cytoxan infusion, on his 5th treatment, his legs are weaker, Anyone with similiar experience, I am desperate to know if I am alone. Pam
Replies to "My son was diagnosed with autoimmune encephalitis 27 months ago. He is an engineer and has..."
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@can9 I am so sorry to hear about you son. It must be so hard for you. Does your son have a rheumatologist who is following his care? Who is managing his care?
I, too, had the 7 rounds of cytoxan. Not a very nice drug, but it did knock out enough of the lymphocytes that were attacking my brain, Then I started another medication called mychophenalate, which I’m still on.
I will check for other members with a similar diagnosis and give you some contact info. Here is a discussion I found.
https://connect.mayoclinic.org/discussion/seizures-due-to-autoimmune-encephalitis/