Brief background of me: I have epilepsy and RRMS. The epilepsy was my 1st symptom, back in 2013/2014 when it was just simple partial temporal lobe seizures. I got my clinically definite RRMS diagnosis a year later after having no sensation on the left side of my face and vertigo. The epilepsy has now advanced onto generalised seizures, and often requiring my husband to call 999 because I've had 3 or more in a row (the most is 9 so far. Promise I'm not proud of that 😅).For the MS, I was on copaxone, tried on tysabri (couldn't continue, high JCV titre), so back on copaxone until the 1st of my status epilepticus events, then ocrevus, and I'm now on kesimpta. I don't think the kesimpta is working well for me. Don't know why, because it's essentially like ocrevus that you can inject yourself at home, but I've had another status epilepticus event the day before my last injection 🫠 but, I got a call today from the MS team, saying I'm going back on it in March, but it'll be like I'm a new patient starting it for the 1st time. I don't care. I'm happy they're happy to get me on it 😁🙌
This is a day of winning 💪: Brief... - My MSAA Community
This is a day of winning 💪
Are you on any meds for reducing seizures? I would think there are alot of them out there.
Yep, 175mg lamotrigine AM, 200mg PM. I increased my pm dose by 25mg the day after I had the seizures and back home. I am thinking of getting diazepam so husband can give me an emergency dose if I were to have another lot 🤔 but, will need to speak to neuro about that 🤷♀️
I’m glad that you are fighting it.
I take Keppra for my seizures and haven't had any for many years. I had grand mal ones. When I first had them, I had one (at work), was taken to the ER where I had another one. It was early in a month and I don't remember that entire month.
When my seizures happen, they may cause me to forget a lot of stuff too! I like to make fun, when talking to husband and friends, that my brain had the biological version of a Blue Screen of Death, or Error: memory not found when forgetting stuff 🤣 they're not big nerds but at least they understand more of what my brain is like. You can make fun of the missing month using that analogy, if you'd like 🫂 use something like, "sorry, my memory's been wiped, what was I doing?" Or, "sorry, my brain had an error and needed to be restarted."
At the time I don't think I knew what even was going on! It wasn't until later that I realized I didn't remember anything that had happened, including my younger daughter's birthday. They tell me that my M-i-L did a little party at her house. To this day, I don't remember.
Yay! I'm happy you're happy!! Hopefully this change helps!
So you get to go back on Ocrevus? I'm happy for you. I hope you do great on it. Having all those seizures must be really scary.
I started taking lamotragine recently, too, but as a mood stabilizer.
I do! 🙌🥳 and I remember, when I was on it, I was also taking tegretol, and because the doctors didn't properly read the meds it interacts with, I had a lot of generalised ones 😒 but, more fool me for not reading the thing inside the medication box 🫣 I do do great on it! I think it's because of the steroids they give you for premeds 🤔 I remember, for my 1st dose, I entered using a wheelchair. Leaving, I was able to walk the wheelchair out! I've also been able to walk when doing our weekly shop! Sure, I had to use my stick or walk holding onto the trolley, but I'm so happy I managed it! Even hubby was impressed watching me walk down the aisle on our wedding last year! Sure, I had to use a walking stick and have my wheelchair on standby just on case, but I walked it! I told my MS nurse that I was getting married on the original day I was to have my infusion of it, and so she brought it forward a couple of weeks 😁🙌 I love my MS nurse back then. I've got a different one now, because I've gone to a different health trust, and she seems just as good.
I so sorry good luck with Ocrevus
dear Cwright170994, you are very courageous and inspirational. Despite having both epilepsy and MS, you are still thankful and joyful. I am glad you are happy to be on Ocrevus. Do take care that these MS meds, don't cause difficulties with your epilepsy. Peace unto you.
I am so, very happy being on them! Like I said, I was on them before, starting in June 2021 until October last year when I tested going on kesimpta. My husband got covid in Dec 2022, a couple of weeks after my infusion, and he was scared of passing it onto me! ❤️ did I get it? Did I shite 🤣🤣🤣 I spent a couple of days taking care of him! Complete role reversal, but I think that my nurse-trained brain is happy to be getting used again! I've bought all the stuff nurses use in observations, and I'm so happy hubby's happy to have this stuff to hand! Sure, I've not qualified, but I'm really happy that it's able to switch on in case of an emergency or something 🤷♀️ scared my husband on night when we were out having a few drinks with his epileptic friend. He was scared at how quickly I changed from "drunk Charlotte" to "emergency Charlotte!" 🤣 now he gets to do it himself 😁
Hi Cwright170994: I was on Copaxone for 25+ years. The side effects were minimal. You can either take the 3 time a week or the very day. I've been on both. Check with your doctors about taking all of the medicines together. I'm still on Lamotrigine for Trigeminal Neuralgial. A very painful face and headache. I took Copaxone while on the Lamotrigine. Please stay strong. There is a solution to all problems! You just have to be persistent and patient with your doctors.
I would still be on copaxone if it helped slow my MS down 😢 apparently I've got the aggressive version, mistaken for one called tumefactive MS when I had an MRI at a hospital in a different trust. I like having the steroids as one of the premeds. I like being able to confidently walk for a few months after.
The steroids is a terrific boost of energy! I receive 1 g of steroids every month to manage my MS! I love it!
They are an absolute godsend sometimes! Bit hit and miss when you're titrating off them, and you can't get to sleep some nights 🫣 but, I love them all the same 😅
20 Jun 2023 The day after
Smile, and you get through it...
Recently Diagnosed with RRMS
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