Autoimmune disease antibody attacking my brain and nervous system..

Posted by longislandswag23 @longislandswag23, May 24, 2023

Has anyone had issues like mine.. 7 months ago really bad headaches weakness fatigue .. Went to gp rheumatologist Neuro all did blood work said it was normal.. Neuro I went to in long island dealt with stroke and brain aneurisyms.. so he referred me to another Neuro.. He said I must say people come to me I'm the weird ishh magnet.. After numerous blood tests they found an antibody attacking my nervous system and brain they said.. They then did 2 lumbar punctures the first I almost passed out ..The second they did get the fluid after waiting over another month or so the results came back normal. Ive had these symptoms for 7 months now and is now affecting my whole body I am walking with a cane I am 48 yrs old. As my feet legs are on fire constantly. It's def tough.. I asked the doc yest what's it called he said Sally tim Bob.. Idk he said I said u dnt know? He said no .But he has a plan in place.. wants me to go for ivig treatment the next 6 months to see if it helps walking. And up my meds I'm taking topistrate and duloxetrine..Someone told me today to see about mayo clinic they can solve anything.. I dnt have a name for the condition tho. Which is strange. I am also a 9/11 survivor NYPD and have obstructive lung disease and are in wtc program. Autoimmune is not covered under 9/11 which is sad this is after I had back surgery , 3 yrs ago my back is fine.But it's crazy the cane is back.. Has anyone gone thru this would mayo be a good fit im trying to weigh all options thks. Brian

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longislandswag23 | @longislandswag23 | Jun 3, 2023

See I did a nerve test but no blood was drawn from nerve test.. I did do plenty of blood work before nerve test that's where the antibody showed up

lasks | @lasks | Jun 3, 2023

I have brain stem and cerebellar encephalitis. Improving slowly. Received steroid infusions for 9 months. Now on CellCept.

vananthony | @vananthony | Jun 3, 2023

In reply to @longislandswag23 "Thk u so much I'll look into this and let mayo clinic now.. How are u..." + (show)

I use a mobility scooter for distance, forearm crutches for short trecs and walker in the house. I have only had 2 treatments with 2 to go. Hoping for improvement.

longislandswag23 | @longislandswag23 | Jun 4, 2023

🙏🙏🙏 speedy recovery

junetooth | @junetooth | Jun 5, 2023

In reply to @lasks "I have brain stem and cerebellar encephalitis. Improving slowly. Received steroid infusions for 9 months. Now..." + (show)

Want to stay in touch with you. Just discharged from hospital . Encephalitis. People around you need to be very aware of your immuno suppression on
Mycophenolate mofatil (celcept sp). Have you had chicken pox as child? If yes, did you have shingles vaccine. For me the immmuno suppression gave varicella zoster free access to the brain. Resulting in Encephalitis.
Lumosity brain program ask speech therapist to improve cognitive recovery. Sorry jumbled message.

ellenanne33 | @ellenanne33 | Jun 5, 2023

Di younfill out petition ?? We havent i thinknour of frustration being they dont want to here it from me for my husband ..maybe we need to get a list of people tonall come together and fight this i get your frustration i see it everyday w my husband and yes all his results were sent to mayo clinic ..please keep me updated

KateG | @gingerbear22 | Jun 5, 2023

I found this article interesting in The Washington Post this past week. Autoimmune disease, inflammation, and the brain
https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/

lasks | @lasks | Jun 5, 2023

In reply to @junetooth "Want to stay in touch with you. Just discharged from hospital . Encephalitis. People around you..." + (show)

Would love to stay in touch with you. Yes, I had chicken pox as a child and also have had the shingles vaccine. I am definitely more prone to illnesses. When I have one I get sicker and it lasts longer. I am good about wearing a mask and my family and friends don't come over when someone in the house is ill. Several months ago I had step throat and herpes. Haven't had strep since a teenager. Never had herpes. My doctor put me on meds immediately.

mermaid7272 | @mermaid7272 | Jun 6, 2023

Had similar problem last year, went on IVIG infusions for about 10 months. Now I THINK I am out of the woods.
I spent 2 weeks in the hospital mostly in a strange coma, and then another 2 weeks in rehab. This was during the COVID crisis. The drs. had no idea what was going on with me and tried steriods which caused severe reactions that nearly did me in! The IVIG infusions helped me tremendously.
Care in hospital was not so good because of all the COVID overcrowding, rehab was a return to normalcy.
My symptoms were too varied to go into here, but now my memory is about about the only problem I have.
There is an online site/group dedicated to Autoimmune Encephalitis that is wonderful, suggest that you Google it.

ellenanne33 | @ellenanne33 | Jun 7, 2023

Thank you for your relpy ...its goung on 3 yrs for us he had been 1st diagnosed w encephalitis in hospital for 2 to 3 weeks has no memory of any of it .thought he was making an improvement for about 9 months and went down hill from there now diagnosed w progressive encephelomyetis with rigidty monoclonous .

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