Has anyone been diagnosed with MTS?

@lisalucier Hi
Thank you for sharing that link!
I'm also sharing another resource from the Epilepsy Foundation with information about Temporal Lobe Epilepsy (TLE) with Mesial Sclerosis:
https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
Chris

My 51 year old sister was just diagnosed with R mesial temporal sclerosis following her first (that we know of) seizure and subsequent fall. I am looking for more information and how to best help her.
What causes this?
What can we expect?
How to best help someone from afar (we live in separate states).
Thank you

Hi, @sharonatx, and welcome to Mayo Clinic Connect. Glad your sister now has a confirmed diagnosis.

The Epilepsy Foundation has some useful information on mesial temporal sclerosis https://www.epilepsy.com/causes/structural/mesial-temporal-sclerosis.

Hoping that other members in this discussion will have thoughts for you as far as helping your sister from another state. Please meet @rtyree1969 @keeg1010 @frandex.

How is your sister doing following her diagnosis?

@lisalucier thank you so much!

Good Afternoon @sharonatx !
A warm welcome to you at the Epilepsy & Seizures group here at Mayo Clinic Connect.
I myself have temporal lobe epilepsy with mesial sclerosis, but on my left side — hippocampus. I've lived with it undiagnosed for several decades, as my seizures were quite mild for a long period of time. The causes of this kind of epilepsy can be several, among them: brain injury, infections, febrile seizures, autoimmune disease, structural brain abnormalities, and genetic susceptibility.
A new diagnosis of temporal lobe epilepsy with mesial temporal sclerosis can feel overwhelming, both for the person diagnosed and for their loved ones. Here are some thoughts that I hope will help you both navigate this journey.
- Understanding the diagnosis
Mesial temporal sclerosis (MTS) is a structural change in a specific area of the brain that's one of the most common causes of temporal lobe epilepsy. Learning about it together can help you both feel more confident in managing this condition. Reputable sources such as the Epilepsy Foundation (epilepsy.com) and Mayo Clinic are excellent starting points.
- Joining communities
One of the hardest aspects of a new diagnosis is the feeling of isolation, especially when the people closest to you are far away. Joining epilepsy communities and forums can be genuinely transformative. Here at Mayo Clinic Connect, you and your sister won't be alone — you'll find others who truly understand what she's going through.
- Specialist care
One of the most important things you can do for your sister is to help her find a neurologist with specific expertise in epilepsy or an epileptologist. Not all neurologists have deep experience with epilepsy.
- Emotional support
A diagnosis like this can bring fear, grief, and a sense of loss of control. Simply being present, listening without judgment, and not minimizing her feelings can mean the world. Regular calls or video chats, sending a thoughtful message on harder days, and simply letting her know you're thinking of her can bring enormous comfort.
Would you mind sharing what medications your sister is currently on? Are her seizures well-controlled? Is her mesial sclerosis in the hippocampus or amygdala? Is she being treated by an epilepsy specialist?
I'd also like to tag some of our members who live with temporal lobe epilepsy and may wish to share their own experience and insights — @kb2014 @krisleekay @lzbthtyler @audo @heatherae.
You're already doing something wonderful just by joining us and being willing to support her in her epilepsy journey. Your sister is fortunate to have you by her side. 💜
Chris

@sharonatx
Welcome to the group. I am so glad you found us. Everyone here are absolutely amazing and knowledgeable. They really care and are a great support. @santosha gave you a ton of information to look through and help support you and your sister through this journey. My son, Keegan, was diagnosed with MTS in 2020. He is 28 years old and never had a seizure until September of 2020. Chris gave you a great amount of information and research that can help you navigate the diagnosis. Has your sister only had that one seizure? What type of seizure was it? Did she lose consciousness? You said she took a fall. How is she doing? Is she taking any seizure medications? Does she have a neurologist or an epileptologist who specializes in MTS? If not, I would recommend she make an appointment. This new diagnosis can be scary but know you are not alone. We are all here for you and your sister and will do our best to answer any questions or make suggestions. I'm really glad that even though you don't live in the same state, you are looking out for her. I'm sure she appreciates that and is comforted knowing you're there.
Feel free to reach out and share any information you are comfortable with.
Kerry