reaching out!!

[Zanzibar3]

I was diagnosed with Autoimmune Encephalitis of the brain and Spinal Cord October 2020.

I received 1 year of IVIG infusions( tapered-completed)

My 2 year anniversary is October 2022

love to share my story with any and all( ask me anything)😀

[kitnkaboodle]

Welcome! We’re glad you’re here.

You and I are on the same timeline! How are you doing these days?

And which type of AE do you have? Which antibody?

Take care,

Kit

[Zanzibar3 in reply to kitnkaboodle]

Hi! Thank you for responding.I had Autoimmune Encephalitis of brain and spinal cord. I year of IVIG infusions, October will be 2 years.

How are you doing?

Any cognitive issues. I still have a little short term memory issues but trying hard to put me first!

How about you?

😀Joan

[kitnkaboodle in reply to Zanzibar3]

Hi again. Sorry for the confusing question; I was asking which antibody was/is associated with your AE, but sometimes one isn't identified. encephalitis.info/pages/cat...

Umm I'm alright haha not really. Just doing the best I can. Are you asking if I have any cognitive issues after E? Yeah, I failed all of the neuropsychology testing and had to quit school and work. I can sometimes manage responding on this board. I still like writing.

I do know many on here/those with E have short-term memory issues. It is quite common after E. Feel free to inquire about others' tactics in managing that. Personally, I make lots of lists, set up visual cues, and set reminders.

Best,

Kit

[Zanzibar3 in reply to kitnkaboodle]

Hi Kit,I failed a lot of the tests as well. I do lists too!

I make sure to get my rest, I still get a bit tired in afternoon.

What’s your day to day like? Can you drive?

If you don’t mind me asking, what delays’s if any do you have?😀Joan

[kitnkaboodle in reply to Zanzibar3]

Yeah, rest is best!

My life is very limited, and nearly every day is the same. I can’t drive, do errands or most chores, socialize, etc. Feel free to read the summary on my profile page. I tried to record everything there and add as new things come up.

In terms of delays, I’d say my mind is very much the same in the way I think and speak and write. The problem is I can’t do any of that for more than a few minutes at a time.

Feel free to ask any specific questions.

[Zanzibar3 in reply to kitnkaboodle]

Hi!how do I get to read your story?Sorry, all new to this😀Joan

[kitnkaboodle in reply to Zanzibar3]

Click on my username > “about” tab > “read more”

This is the link to my profile: healthunlocked.com/user/kit...

[kitnkaboodle in reply to Zanzibar3]

You can also read others’ published stories on the Encephalitis Society website. I’ve thought about publishing here, but I don’t have the energy—or some miraculous recovery to share.

encephalitis.info/pages/cat...

[Mattn78]

Hi

Welcome i had E in May/June 2020 they think it was viral but never identified the virus type.

I have been very lucky with my recovery but i do have some Cognitive issues have to make reminder lists etc and also get anxiety, depression and emotional issues as well which led me to the encephalitis society and then to here!

Matt

[Zanzibar3 in reply to Mattn78]

Hi!I am almost to my 2 year mark! I make a lot of lists.

I have short term memory issues. But I am grateful to be alive. I have anxiety, depression, and OCD.

I take medication prescribed by Psychiatrist.

That helps a lot. This is my second post so I am new. Do you have any delays due to E?

Thanks for responding!

[Paula-38]

Hi Zanzibar3,

I had Herpes simplex viral encephalitis the day after my first birthday. I suffer from profound OCD which is a seriously disabling anxiety disorder, yes of course I have anxiety/ panic attacks and I have had clinical depression.

Nice to meet someone who understands what life with OCD is like after having had encephalitis first.

I never had any trouble with my memory though. My story is on the Encephalitis Society website. I have also put up numerous different posts on here regarding my LifelongEncephalitusJourney , and undiagnosed ABI , some posts about never being disabled, erm oh and the way I feel in comparison to others who have experienced two lives before and after, whereas I only had the one life and that was after ehich is so difficult trying to explain this to other E peeps it took me 2 years . Sigh

Paula-38

[Kw55]

Hi. My husband has just last week had a 5 day course of IVIG but we have yet to see any effects from it. If you dont mind would you be able to let me know your experience with it and how long it took to start working as we dont know of anyone else who has had this treatment.

[Zanzibar3]

Hi, Joan here🌺Sara sent me a message and I gave her the OK for my e-mail. I had OCD before E, so E did not make it worse.

How is your OCD?