Hello

Hey Tom, just read the article about you.  I do hope you join this group.  Look at the left where it says *NEW* Discussion Forum and sign up!

Ingrid/Tarrytown, NY
HSE 12/95 (I was 45 years old)

I

this is a really cool site, im really lookin forward to talk with others that have gone through the same thing.

For all of you newcomers to this site, please go to "NEW" Discussion Forum (to the left here) and sign up for our support group at Inspire.  I would like to invite all of you to join.  I think not everyone reads this posts here and don't know how many are out there, not members of the group and not getting the advice/information/shoulder to cry on that they need.

Ingrid/NYS
HSE 12/95 (I was 45 years old)

I am a 36 year old who contracted HSV last year. I was initially misdiagnosed with "global amnesia" (is that a real diagnosis?) in the ER. Following my month-long (?) treatment of acyclovir was released and then began an intense month of daily routine therapy. They I have recovered to a great degree I am still far from where I was. My memory lapses are still terrifying at times. Remembering the locations of areas I was once familiar with are difficult. My emotions range from depression through frustration and anger. It's very difficult for me to envision ever having a normal life again.

I believe i have some sort of encephalitis from a STD i picked up. I am terrified for my life. But am having problems getting a diagnosis. Im young im a fighter but every doctor i see is telling me its anxiety. its been 16 days since the symptoms started... i've been on the break of commiting suicide out of pain, I've been so dizzy that i've nearly passed out. I've had so much pain that i found it hard to walk and i've lost feeling and taste in my entire body. Now if thats anxiety... I must be the happiest guy alive because i've never experienced this. Its been managable the last 24 hours.. Wish me luck.

I didn't even know what Encephalits was until I got it.  Now I am glad I didn't know what it was til after I was better.

http://www.inspire.com/groups/encephalitis-global/ -- for all of the people who have recently posted here, please join our support group.  We are all survivors and their caregivers.  We know more about the residuals of encephalitis than most doctors.  Please join us.

I did not know this organization existed.  I contracted Acute Encephilitis when I was 12 years old.  I am now 57 years old and still do not have full use of my legs.  Wendy was kind enough to write me about this organization and I am truly thankful.

I have just begun a series of books on my disease, the resulting disabilities, and my subsequent recovery.  Please visit www.jacksshop.com for more details on my story.  I would love to hear from other suvivors.  I can be contacted at JacksShop@gmail.com

                                                    God Bless!
                                                    James P. Herndon

I just want to thank Wendy and this web sight for helping my husband and I get through the early stages of his encephalitis adventure. It has been several years and he is alive and kicking and we could not be happier. The road is long but you made it easier.  Thank  You Encephalitis Global.      Hoboswife

MY SON IS 15 AND IS IN THE HOSPITAL WITH ENCEPHALITIS. HIS BRAIN ISN'T RECOVERING.

drowning in my emotions

Greetings..

I was 7 when I had viral e after a bout of some child hood disease. It effected my eyes and I had to have a teacher agree to give me meds and drops so I could continue in school. I have night sizures, and a zillion other issues the latest being "a wildly erratic heartbeat" anyone out there? I just spent 24 hours in the ER because I keep getting dizzy and off balance. I can't exercise, I can hardly walk without loosing breath and getting lightheaded. Does anyone know if there is such a thing as PES?? I am now 63 and feel like, OK here we go again. After reading it seems everything that was ever wrong with me could be caused by my having had Encephalitis. What is real??? I would love to "talk."

I am the mother of a six year old, that got HSV encephalitis at the age of 10 months. She is able to walk ,she only saids apple when she wants her sippy cup. There is times when she says mom. She also has seizures. I had a hard time getting  her  good doctor that understand what she going through. She did had one when she first got sick but we moved to 2 hr  away.  But I keep trying to find one in are city.  I also want to said Thank you for this web site.

Im not alone! This is going to be so helpful. Somewhere to go for advice and reassurance that Im not a nutter. Thank you thank you thank you

My son suffered viral encephalitis at 3 months.  He had seizures, sometimes it seemed like he was in a constant state of seizures as both his eyes were rolling about even when he was heavily sedated.  It was a very scary time for us as even his doctors thought he may not of pulled through...he is 8 months now and he is still on medication for seizures and the doctors told me to expect developmental delays but so far hs is reaching all his milestones and is a delightful child.  Im not losing hope that with prayer my baby will be 100% normal.