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Old 07-08-2012, 06:21 PM   #1
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Question MS Related Seizures

Okay so for once I'm not starting a thread regarding my issues, this time its my mom. Before I begin I should say that she currently has Secondary Progressive MS, shes 35, and has had it since the age of 14. She is in a wheelchair, and can barely remember anyone or anything. But at least she was happy, before now.

Anyway, yesterday morning she began having seizures they haven't stopped since. She was rushed to the ER, and was tested to find the source. I've been with her ever since and she is showing no signs of waking up anytime soon. I know they have her on meds to lower her seizure severity and she isn't in any pain either but...I'm really scared. This has never happened before.

After rushed testing today they labeled her seizures as being caused by her MS. I've done extensive research over the last 24 hours on the topic. All I learned is that MS seizures are pretty rare, which might explain why I found very little information on them.

I guess what I'm looking for here is anything that might help. Ranging from information to personal experience. As you can imagine, I'm very stressed out over this entire matter. But I still want to do what I can to help, even if its just a little.

I know that MS is not fatal illness but...I've never been told that MS seizures aren't. Also given my mom's current state, she can't afford anymore brain damage. I hate to admit it but, her survival rate looks 50/50 at best. And if she wakes up, she will most likely have taken significant brain damage. That could lead to some huge issues too.

My apologies for the long post. I just have so many unanswered questions, and watching my mom go through this and being unable to do anything about it is driving me insane. Therefore, any help regarding this situation is much appreciated...

Last edited by ArcticWolf; 07-08-2012 at 06:24 PM.

 
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Old 07-08-2012, 06:28 PM   #2
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Re: MS Related Seizures

I have had MS seizures previously. It has been some time since I experienced my last one. My experience with seizures left me bedridden for a good 6 months. I recovered my abilities , though it did take some time.

I will keep your mom in my prayers.
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Old 07-10-2012, 11:40 AM   #3
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Re: MS Related Seizures

So going off of your experience, you'd say its safe to say that these are something she can survive and possibly recover from eventually? I know your experience is probably alot different but, are MS seizures (even if rare) considered fatal at all?

Also much thanks!

 
Old 07-10-2012, 12:03 PM   #4
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Re: MS Related Seizures

Quote:
Originally Posted by ArcticWolf View Post
are MS seizures (even if rare) considered fatal at all?

Also much thanks!
I am still alive and I have not read my obituary yet! I will tell you that the seizures made me feel as close to death as I have ever felt, but with plenty of rest, it is possible to recover. How each MSer handles a seizure or how they recover from a seizure is really difficult to say with any certainty. MS Seizures affect about 5% of MSers; therefore, they are considered rare. The only fatal MS is the Marburg's Variant and it usually proves fatal within 5-6 years of onset. It is quite rare.

I am certainly praying that if your mom's seizures are MS related that she will make a full recovery. For me it was quite a slow recovery, but I am still here!

Stay strong and let your mom know that she is in my prayers.
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Old 07-11-2012, 12:12 PM   #5
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Re: MS Related Seizures

Well I'm totally fine if it takes her awhile to recover basic movement skills and thats understandable. I'll be more at rest once she simply wakes up and can breathe on her own. Not to mention the longer she is on all these high dose meds for seizures and the machines, that all has to be doing some damage too. But I'm glad to hear you made quite the recovery, that gives me hope here!

The good news is they know the source of the seizures now. They have blamed it half to the MS and all the deterioration in her brain. The rest is blamed to a UTI infection that has spread up into the blood. My mom has had a history of severe UTIs in the past, but has recovered.This time appearently she had a minor one (and she can is unable alert us to anything wrong internally so it went undetected) and the spread caused her to have seizures.

Which leads me to a few more questions for ya. First, do you know if MS can trigger infections at all? I know MS can cause bladder issues but I've never heard of it causing infections. But I guess if it can trigger seizures, it could trigger infections too.

Second (and this one I'm just asking for your experience) did you have any seizures following your initial 6 month hospitalization? Another concern is that if she recovers from these seizures but has another severe episode, I don't think she would survive. Minor ones would be manageable I'm sure. Also, did they give you anything to prevent future seizures? Because I know once you have them, you are more at risk in the future.

 
Old 07-11-2012, 12:55 PM   #6
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Re: MS Related Seizures

If an MSer has bladder issues, then those issues can contribute to an infection, I believe. Also, if your mom is taking immune suppressants, this would leave her susceptible to infections, I think.

As to the cause of the seizure, I can see MS but both MS and an infection? I would probably suspect an infection due to her breathing issues with MS possibly playing a role, but, I think, her MS is more likely making a cameo appearance. Brain infections can trigger the onset of MS and/or leave a person with lesions whether they are an MSer or not.

I was at home for all my seizures but one, which I had before they could slide me into the MRI. I never had any breathing issues. Since I did have MS Seizures, my body may re-visit the seizures sometime- BUT there is no guarantee. My strongest seizures are what put me in bed. While I was recovering i had seizures, but not as bad. My service dog was able to alert me beforehand. When I had a seizure at night he would wake me up and if he could not wake me up, he would run to find someone to "tell".

Your mom's recovery will be mainly based upon the infection and what damage it may have caused- I think. I would certainly ask your questions with your mother's attending doctor. You are both in my prayers.
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Old 07-17-2012, 03:31 PM   #7
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Re: MS Related Seizures

What you say appears to fit the case. They have shifted their views to blaming the infections for the majority of the issues currently present. However, they are still putting some of it on the MS and the atrophy of the brain as well. They have also concluded that her receiving an IV a few days before her seizures started may have had an impact as well (I don't know much about that but I know her MS is treated with once a month IVs instead of direct injection meds). I don't know what to believe there...I guess time will tell.

The good news is she finally woke up (for short periods) and she is now breathing on her own. Basic reflexes have returned as well (she can squeeze hands etc. We're just waiting to how her reflexes come back and hopefully her memory will accompany that somewhat. The seizures even though they are not completely identified, they are being treated well. I'm really happy to see the progress shes made so far and its taken alot of worry from me now that shes conscious. They say she might even be back home in a few weeks.

Also, dogs can be used to detect seizures? I had heard that once before but, I wonder how they train them to do that...sounds interesting.

 
Old 07-17-2012, 04:39 PM   #8
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Re: MS Related Seizures

Thanks for the update on your Mom. Do you know what meds she is given? Is it Tysabri? If your mom is progressive, the meds will not help. If she is on Tysabri, please make sure that an MRI has been done to detect PML which can damage the brain. She should also be checked for the JC virus.

I learned from my vet that the reason my service dog probably could sense my seizures was because he had been my constant pal from the time he was 3 months old. She told me that such bonding usually makes the dog more aware of changes. He also knows my good days and bad days and when I lose vision. There are seizure alert dogs, but I do not have any idea as to how they are trained for that duty. I am sure they are much more expensive.

I am still lifting you and your mom up in prayer.
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Old 08-07-2012, 12:55 PM   #9
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Re: MS Related Seizures

Well I don't know about the med itself but its called Extavia (hope I spelled that right). Anyway, she is now out of the hospital, and her seizures are now controlled. She is also awake and alert to certain things like noises. However, she is still tired so attempting anything involving motor skills is off the table, and she doesn't really recognize anyone. Furthermore, they are still trying to answer questions because not much has really been figured out yet. They still blame undetected UTIs mostly. But shes out of the hospital and awake so that is huge to me.

Oh and for the time being they have ceased all unnecessary MS treatment. Only absolutly necessary meds are being taken. Like 3 seizure meds, something for spasticity (I don't even get what that is but I think its MS related), and some pain killers etc. They are waiting to see how she reacts to the new meds and they plan to go from there. Though they have said that 3 seizure meds is bad so they are going to try and cut back.

Concerning what you said about treating progressive MS. I don't know if its 'official' but her foster mom said she has secondary progressive. I have heard that secondary progressive MS can't be treated the normal way so maybe thats another reason they haven't resumed the Extavia. In any case I'm glad shes okay for now.

Last edited by ArcticWolf; 08-07-2012 at 01:01 PM.

 
Old 08-07-2012, 01:03 PM   #10
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Re: MS Related Seizures

There you are- again Thanks for the update on your mom. SPMS meds have some approvals, but I doubt the ability of them greatly.

Seizures can sap your energy depending on the seizure intensity and length. That was one thing I hated about my seizures. It left me not wanting to do anything, nor could i when I was drained of energy.

I am happy your mom is out of the hospital. I hope she gets through the seizures and can regain some of her "normal" life again!
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