Has anyone been diagnosed with MTS?

@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

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

@lisalucier thank you so much!

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?

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

@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

@frandex
I'd also like to welcome you to the group!
I'm so sorry to hear your daughter is having seizures every day. It's actually common for speech to be affected during focal seizures. With auras (focal aware seizures), speech typically returns right after the seizure ends, while with complex partial seizures (focal impaired awareness seizures), it can take a bit longer to fully regain full speech.
You asked if your daughter can be cured of epilepsy. Since she's still a child, there's a real chance that the ketogenic diet could help control or even resolve her epilepsy, especially if it's treatment-resistant. There's a wonderful movie about this starring Meryl Streep – it's based on a true story of a mother fighting to help her young son with severe epilepsy. The film really brings awareness to the ketogenic diet as a legitimate treatment option, particularly for children with intractable epilepsy. Here are the details, in case it interests you:
Movie: "First, do no Harm"

Hi @rtyree1969
Welcome to our group!
I'm so happy to hear you've been seizure-free for 14 years with just Keppra! That's truly wonderful, and quite remarkable considering mesial sclerosis in the temporal lobe often makes epilepsy harder to control.
I was diagnosed with left temporal lobe epilepsy at 48 (through an EEG in 2019), and a year later, an MRI showed mesial sclerosis in my left hippocampus. I'd actually been living with epilepsy for decades without knowing it – my seizures started in adolescence as very mild focal ones and gradually became stronger. The tricky part was that all my EEGs came back normal until 2019. My mesial sclerosis likely developed from a childhood accident, which became the root cause of my epilepsy.
Epidiolex has been really helpful for me, just like it's been for Kerry's son (@keeg1010). I added Keppra last December and had nearly 8 wonderful seizure-free months. Unfortunately, they've returned despite increasing the dose. So it looks like I'll be trying another AED soon, together with Epidiolex. I'm just finishing up some tests my neurologist ordered.
I'm wondering if you already had mesial sclerosis during these 14 years of no seizures or if this might have developed later from a specific event? It would definitely be worth asking your neurologist about the timing.
Also, when your seizures first started before Keppra, were they only focal ones, or did you experience tonic-clonic seizures too?
I agree with Kerry's suggestion about getting an extended EEG, ideally a video one. It can provide a lot of helpful information.
I hope you will soon get answers as to why your seizures returned. And if I can be of any help, please feel free to contact me.
Chris (@santosha)

@lisalucier she's active when even it starts, I will be talking to her and she always responds, and stop in a minute

Hi @frandex - welcome to Mayo Clinic Connect. I'm glad you got a diagnosis for your daughter. However, I can imagine any diagnosis related to seizure is a lot to take in for your small child.

The Epilepsy Foundation has some helpful information about this condition:

- Mesial Temporal Sclerosis (MTS) https://www.epilepsy.com/causes/structural/mesial-temporal-sclerosis

When you said your daughter is having crises for a minute every morning, will you describe those?