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Frequently Asked Questions

Long-term post Autoimmune Encephalitis Care

How can I prepare for a successful Doctor’s appointment?

What is a case Manager and how can one assist me?

What drug manufacturers in the U.S.A. offer free treatments for AE and how can I access them?

My child needs educational support. What is a 504 education plan and how do I effectively request a planning meeting?

What is a home care waiver?

What is vocational rehabilitation?

Does a diagnosis of AE qualify me for Social Security? How do I apply?

I am 65 and on SSDI due to my AE, do I have to sign up for Medicare or will it be adjusted to SSI at 66 years and seven months of age?

Am I eligible for Medicaid?

If I am disabled from my autoimmune encephalitis, can I receive student loan forgiveness?

Can I get assistance paying for my home property taxes due to my disability?

FAQs

What is Autoimmune Encephalitis?

Is there a cure for autoimmune encephalitis?

Where did the terms AE Warrior, AE Journey & AE Family come from?

What is the awareness ribbon for autoimmune encephalitis?

What is the difference between ‘encephalitis’ and ‘encephalopathy’? Are they the same thing?

Is Pandas/PANS Autoimmune Encephalitis?

How is Autoimmune Encephalitis diagnosed?

When should seronegative Autoimmune Encephalitis be suspected in children?

Why does it take so long to diagnose a child with autoimmune encephalitis?

I have all the symptoms of AE does that mean I have AE?

Is loss of taste and smell included in the symptoms of AE?

What is a differential diagnosis?

My TPO thyroid antibodies are out of range. Is this finding indicative of AE?

What are white matter lesions, and when are they a problem?

The doctors have said they may have to intubate my daughter. She must be medicated to stop her seizures and may stay unconscious. What does intubated mean?

I have seizures, What is a seizure action plan?

I am a Caregiver. What can I do to help my loved one with AE?

What are executive functions?

What is a clock test?

What is a neuropsychological evaluation?

What is an FDG-pet scan?

What are the chances of experiencing a relapse?

I have an acquired brain injury, (ABI) from Autoimmune Encephalitis. What can I do to help re-learn/ re-train my brain?

What should I expect to see in my recovery?

How Long does treatment last?

My minor child is being discharged from the hospital to an in-patient rehabilitation facility. What should I expect?

What should I expect in rehabilitation?

I am about to start IV Steroid treatment. I understand that there are concerning side-effects regarding steroid-induced osteoporosis. Are there any dietary changes I can make while having this therapy?

I am about to start IV steroids. Do you have any helpful tips or advice?

My doctor has prescribed IVIG. What can you tell me about it?

What is a port, and when should it be considered for a patient?

What is plasmapharesis? What should I expect?

My doctor has prescribed Rituxan. What can you tell me about it?

When is Bortezomib treatment used?

When is Tocilizumab treatment used?

What is the Cyclophosphamide/Cytoxan treatment?

I’m immunosuppressed. Are probiotics safe?

How do I successfully appeal or avoid an insurance denial?

What Are B cells and T cell?

Do All types of antibodies work the same way?

What are the different known antibodies discovered to be causing Autoimmune Encephalitis?

What is Stiff Person’s Syndrome?

What is Autoimmune/Paraneoplastic Cerebellar Ataxia?

Is antibody negative (seronegative) AE treated differently than AE with an identified antibody?

What is a teratoma?

What is myoclonus? I experience body jerks, shakes, and spasms. They are very alarming. My doctors says it is myoclonus.

How Does Sleep Loss Affect the Autoimmune Encephalitis Patient?

I am having trouble talking and writing. My doctor says I have aphasia. What is aphasia?

I still have memory issues a year after my treatments for AE. How long does it take the memory to be fully functional again?

What is Autoimmune Psychosis?

What is Autoimmune Epilepsy?

What is Limbic Encephaitis?

Ever since my diagnosis of Limbic Encephaitis, I find I cry easily and often. Why is that?

What is ADEM?

Can you give some tips on traveling by airplane?

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US

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352-527-2470

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IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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