Matthew: Encephalitis Lived Experience

[@drinajgb2437]

My husband had hsv encephalitis in 2010. He was life flighted to Texas medical center as a stroke patient.He was misdiagnosed for days until he went on life support and mri revealed the encephalitis. He remained in facilities for 4 months.He was also an architect and had a design studio. He had a Masters from Rice University. That ended at the age of 52. He never returned to his profession. He is still with me but now has dementia. This disease literally took away the life he had. You are right people don’t know how to treat you. They all slowly fade away. You do need to be kind to yourself. Best of luck to you and thank you for sharing.

[@annali2441]

I had encephalitis 2 months ago. And so much of what you described is exactly what I'm going through now. No I'm not the same person anymore I'm sort of detached and lost. But watching this has given me hope and comfort to move forward knowing I'm not alone. All the very best to you Mathew thank you for posting.

[@encephalitisinternational]

Please do get in touch if you would like any support though your recent experience of encephalitis.

[@RicardoGarcia-wo9xx]

Matthew, your post made me cry. I'm still in recovery from Encephalitis. I cried watching your vid because i can relate so much. November 2022 marks the 1 year mark but i can barely remember anything from this past year. I hate this disease. Thank you for sharing.

[@ermiratozaj6131]

God Bless you 🙏🕊

[@tinakokkinos4049]

Thank you for sharing your experience. You are a very well spoken man. Everything you said I can certainly relate to. It is so true it is a journey and our brains are amazing. I too feel that I have lost the old me but also happy with the new me and my same brain. All the best to you and your health.

[@REmm-rf8fl]

This really resonates. Thanks for this

[@johngearty1815]

Thank you Matthew for sharing this very honest account . I have no doubt that it will be of help to someone else. An amazing story. John G in Ireland

[@bushknobile]

Thank you so much for sharing your story. You give me great hope for my husband who is four months in from AE diagnosis and treatments.

[@judieldiaz4563]

I can relate with you especially during the time you are recovering with encephalitis

[@AUDSLPHIMANSHUKUMARSANJU]

My mom is suffering from HSV encephalitis, she is in ICU from last 18 days. Please pray

[@encephalitisinternational]

Hi, if you would like any support with this please do get in touch via our website.

[@OneEarthOneFamily1947]

Hows your mother?

[@DaBabyDoll1]

I’m sorry and I’m glad you’re ok

[@KMx108]

Thank you so much for sharing your story ❤️

[@christinasmith9952]

Wonderful. I wish you had been able to say your drugs and tests they did. But you have given me hope.

[@sharoncasey74]

Thank you for sharing your experience.. my own symptoms were almost the same as yours.. glad you are doing well now

[@charleslarahibbard3515]

Thanks for sharing your experience. Resonates with me.

[@heatherwanamaker8000]

My heart goes out to you. I, too, have encephalitis. I have no headaches or strokes, but I did have balance issues-and still do on occasion. I was in a coma for some time and I still have short term memory loss.

[@katemac5328]

This is brilliant. You nailed it. Thank you

[@sandhyasingh8568]

My son had same problem like you it’s very hard l can understand what you going through bless you my son

[@hussaian143]

Good morning madam My kid facing problem with dengue encephalitis acute necrotising from last one year. Do you have any idea about how to treat this problem. I'm from Hyderabad

[@hussaian143]

I hope your son ll recover as soon as possible.,👍

[@stayciiekel2564]

I have had encephalitis twice now. First time in 2022 and the last time was September 2023.. i was put in a coma for 2 werks and had to stay in hospital for a month .The last time was was admitted as nothing was stopping my seizures. I have absolutely no recollection of these hospital stays, my youngest sons birth notging from the last 4-5 years. I feel like i am always angry and i am never getting the answers i need. This situation has depressed me completely, its been just over a year and i dont leave my room much ,i feel like a failure all thr time, like my kids deserve so much more and rhat i am dumb. Some days i cant talk properly it ruins me, i hate it. And there is noone to talk to about this, qnd trust me ive tried to get into groups with people that have the same situation, but noone here has. Im just so tired. Regard Stacey.

[@encephalitisinternational]

Hi Stacey, I am so sorry to hear about your experience of encephalitis. We have a support line and email if you would like to get in touch [e-mail] [phone]

[@jaden_with_a_y1601]

I had a seizure on national encephalitis day I had no idea what I was about to go through but I’m better now

[@richeleortiz5181]

I was hospitalized and diagnosed with HSV2 encephalitis in August. It took a team of 6 doctors to treat me. The first hospital I was taken to had no idea what was wrong with me and had never seen a case like mine. 2 months later I am back to work but I don't feel like the same person I was before I got sick. I have extreme fatigue and my mind feels dull. I have no desire to interact with other people anymore. Here in America encephalitis is rare and information on it is hard to find. Will I always feel like this or does it improve with time?

[@encephalitisinternational]

Thank you for your comment and for sharing some of your experiences, Richele. We are so sorry to hear of your recent HSV2 encephalitis. You are not alone, we are here for you. Please don't hesitate to reach out to our friendly support team with any questions you have, at [e-mail]. We also have a wealth of information about encephalitis, and free services to help you connect with others with similar experiences, on our website: www.encephalitis.info/

[@roreetinkerbell6893]

​@@encephalitisinternationalmay I reach out too please?

[@fredaragusi4393]

Hi I just read this and we think i have Auto immune Encephelitis, got Bad EEG readings, migraines, fatique, memory issues im 62 and it took 55 years to think outside the migraine Box we ma could have found it earlier.what is the treatment? Thanks in advance.

[@encephalitisinternational]

Hi, please check our website for ways we may be able to support you. Diagnosis is very tricky. We have email and telephone support if you have any questions.

[@roreetinkerbell6893]

I am going through difficulties in diagnosis. ​@@encephalitisinternational

[@roreetinkerbell6893]

I got told mine was the menopause (I still have frequent periods)

[@louiegatchalian9314]

What anti seizure meds are you taking on a daily basis. Tnx

[@louiegatchalian9314]

May i ask what anti seizure meds you are taking nòw on a daily basis.

[@feveratemotive]

My brother is suffering autoimmune encephalitis since three months he getting seizures since three months please help even after lot medication also no much improvement he still on bed no movement. Getting continue seizures.

[@encephalitisinternational]

Hi, I am so sorry to hear this. Please get in touch with our support line [phone] or email [e-mail] if we can help in any way.

[@heatherwanamaker8000]

I meant to add that I have auto-immune encephalitis

[@graemegeorgeharrison2468]

Can you get tested for this condition?

[@talltrees358]

Blood and spinal fluid.