Has anyone been diagnosed with MTS?

Hi, @rtyree1969 - welcome to Mayo Clinic Connect. That is great that you had no seizures in 14 years. I'm sorry you've now had 2 in 6 weeks.

To confirm due to the plethora of acronyms in medicine, confirming you meant you are diagnosed with mesial temporal sclerosis? If so, when were you diagnosed, and how have you been treated so far?

@lisalucier
I was diagnosed on 11/6, from my MRI. They increased my Keppra dosage. They will not take any further action unless I have another seizure or they find something on my scheduled EEG.

Mesial temporal sclerosis is correct.

@rtyree1969 - I'm tagging a few Mayo Clinic Connect members who have mentioned mesial temporal sclerosis so they can tell you a bit about their or their loved one's experiences with diagnosis and treatment for it @heal33 @santosha @keeg1010 @kimroepke. @jakedduck1 also may have some thoughts for you.

Hi @rtyree1969 ,
I'm so sorry to hear about the seizures but I am thrilled that you were seizure free for 14 years. You said you were diagnosed with Mesial Temporal Sclerosis on 11/6? When did your seizures start? Did you have a previous diagnosis? I'm just a little confused about the time frame. I understand that you are only on Keppra and they increased the dosage. Is that helping? Have you ever tried any other seizure meds? As far as the EEG, is it an extended EEG, ie..for 24-72 hours? I don't see the point of doing an EEG that isn't over a period of time because an EEG won't show seizures unless you're having one during the test.
As far as the diagnosis, my son had a diagnosis of MTS but didn't have a seizure until 2020. He is now 28 and was seizure free until adulthood. We went through several seizure meds that did not work for my son. He had major side effects from Depakote and Gabapentin. He now takes Lamotrigine 225mg twice a day and is also on Epidiolex 7.25ml twice a day. Epidiolex is a pure form of CBD that has worked fantastic for my son. He went 2 years, after starting Epidiolex, seizure free. We were lucky enough to get in to Mayo clinic and have a wonderful neurologist. Prior to Mayo, the neurologist we saw recommended CBD but couldn't write a prescription for it.
I would definitely talk with your neurologist about the EEG and get more information. How long have you been on Keppra? I'm just trying to figure out if that kept your seizures under control for 14 years and if that's the reason they don't want to make any changes.
There are wonderful people on this board that were EXTREMELY helpful when my son was first diagnosed. I am so glad you found this group. They are a great support system and extremely knowledgeable.
Looking forward to talking soon 🙂
Kerry

Can someone be free from seizure? My 2years old daughter just been diagnosed, can some one tell me more about this sickness please? She normally had crises every morning for 1 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?

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

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)

@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"