Seizures & MS?

[funmonkeytoes]

I was diagnosed with MS eight years ago, and since then have had approximately six "seizure-like episodes".  My neurologist originally thought they might have been absence seizures, but the last two consisted of a lot of jerking.  After the last episode, I was unable to speak normally.  I spoke very s l o w l y for about three weeks and then I got better.  I had an MRI which showed no new lesions - but not an EEG.  Has anyone had seizures associated with MS?

[Momzilla]

I have had partial simple or simple partial (whichever way it's said, sorry) seizures, and have abnormal EEGs, but no Dx of MS.

I have read that seizures can be a rare symptom of MS,I would assume, depending on the location of lesions.  And many MS patients have abnormal EEGs, or electrical activity, with no seizure activity at all.  

The neruo that administered the 24 hr. EEG that showed up abnormal for me, showed I was having absence seizures every couple of minutes, which I wasn't.  He said it meant I had scarring that was too early to show up on an MRI.  Go Figure!

Good luck and feel well.  Not feeling well for three weeks afterward seems very odd to me.  WHat did the neuro say about that?

Zilla*

[Momzilla]

Now that I think of it, it makes little sense that effects of a seizure would last that long.  Your slow speech seems more likely to be caused by either a relapse or a vascular accident.  Since you have MS, I would guess it's a relapse, don't you?  

How well do you like your neuro?

Zilla*

[funmonkeytoes]

Thank you for your insight.  My neurologist did, in fact, think it was an MS exacerbation.  It was rather scary -- when I first told her -- I was on Tysabri (my first "jerking" seizure w/speech problems).  I had weak legs at the time too.  She had me come in right away -- fearing I might have PML.  Since my MRI was clear, she explained it simply as a flare-up.  I have not had an infusion of Tysabri since then.......just the thought and the fear was enough for me to stop.  Not to mention I had three flare-ups in the first five months of treatment.  I am crossing my fingers to get back on IVIg.  My appointment with the Immunologist is January 30th -- I'll keep you posted.  Once again, thank you. I wish you health and happiness also!

[Momzilla]

Hi, again~

You've mentioned the IVIg before and I find it very intriguing.  I don't know much about it.  Perhaps you wouldn't mind posting something about your experience with it, along with your history, so others might benefit from it.

Also, I wanted to let you know that Elaine, Craig's (monotreme's) wife is reading some books writeen by Montel Williams, who supplements his MS medications with lots of alternative therapies.  Specific vitamins, minerals and things that may be of interest to you.  If you've not read any of his books, you may want to.

Thank you and you take care, too!

Zilla*

[Rena705]

Just wanted to let you know that I presented with Grand Mal seizures back in 1993, the first time I was diagnosed with MS.  

It started with waking in the morning with severely sore muscles and patechia (sp) (little broken blood vessels) in the whites of my eyes and on my neck.  Then I would wake with those symptoms and blood on my pillow,  Talk about freaky!

Turned out I was only having these seizures at night and blood on my pillow was from biting my tongue!  I had quite a few seizures before they discovered what the cause was for all my symptoms and I think it was the most difficult time of my life.  They FINALLY did an MRI and a Lumbar Puncture which were both positive.  I have been on Tegretol ever since and I am happy to say that I have not had a seizure for about 10-12 years!

I was told at the time of my first diagnosis that presentation with seizures with a following diagnosis of MS is extremely rare...now whether that is true or not I don't really know.  I wish you all the luck in the world for the future and please let us know how you are making out ok?

Lots of Hugs,

Rena705

[funmonkeytoes]

Momzilla,

I have read Montel Williams' first book, which consisted (for the most part) of inspirational quotes.  I haven't read any of his other books, but next time I am at the library -- well, my kids are there -- I'll ask them to check out his other books.

Now, about alternative treatments -- I do have an appointment with a chiropractor this week.  I have never seen one, but I am looking forward to see what he has to offer, if anything, in dealing with some of my MS symptoms.

I'd be happy to write about my experience with IVIg.  It was really beginning to work for me, and I am hoping that will be the next thing I am on.  From all that I'd read before I had it, the side-effects were minimal and the benefits are controversial in the MS field.  They have tested it quite extensively to treat other auto-immune disorders, and to a greater degree in other countries -- but the findings seem contradictory from one study to the next.  I think the benefits depend on what your symptoms are and what you want (or expect) from your MS treatment.  I'll elaborate on this in another post.

I neglected to answer your previous question about my neurologist.  I have been seeing her for seven years now, she is my third neurologist; I adore her while finding her to be thorough, knowledgeable, and empathetic.  When I moved to WI recently I decided to keep her as my doctor even though my husband and I have to drive ninety minutes for a visit......then I have the wonderful benefit of having an immunologist.  His insight into the way auto-immune disorders work and the wealth of medications to treat them has been [to me] the difference between waiting for new drugs to be released specifically for MS or being able to try other off-label drugs that neurologists may not be as familiar with -- like IVIg.  When all of the FDA approved drugs have failed to control your disease/symptoms, the expertise of an immunologist is a wonderful addition to your medical "team".

I will let you know what happens along the way.  I should know shortly what path I will be taking.

Thank you for your suggestions and kindness.  Peace and health to you.

Funmonkeytoes

** Rena705 - Thank you for your post.  It seems not too many MS patients experience seizures -- but I am glad to know I am not alone [that is, if my experiences have truly been seizure activity?].  I will post about the seizures if/when I find out more.  Hugs to you as well!

[dowma]

I havent posted in a while, still in limboland and don't have a real diagnosis.  BUT all this hit home.  Recently went into hosp. for 48 hr EEG ( second time, first time 5 days) it showed abnormal electirical acitivity but no seizures.  Not sure whats going on.  Past LP and all labs normal.  
My neuro put me on IVIG for the last 4 months contributing it all to some sort of neuro autoimmune disease ???  He beleives its inflammatory.  I did have abnormal neuropysch. eval.  Some small non-significant white matter foci and abnormal PET scan that showed hypometabolism in the left parietal region.  Well, long story short wasn't getting any better from IVIG actually symptoms worsened such as vision felt as if "shaking" sorry only way I could describe it, as well as nausea and numbness and tingling upper and lower extrem.  ( 2 EMG in past neg.)
I'm waiting to go for follow-up hopefully tomorrow for hosp. stay last week ( LP, 48hr EEG, labs and repeat neuropsych.)  They wanted to send me home on lamictal for "frequent small seizures" I m not too sure.  But refused until  all testing is back and I see my own doc.  
So interesting to read everyone else's experiences thanks, I'll keep you posted as to my outcome.  Good luck to you all.  MB

[dowma]

bump up: curious about your response  thanks MB

[BethieBoo81]

Funny that "they" say that seizures and MS don't go hand in hand because my mom was diagnosed with MS in 1988 and had a Grand-maul seizure in Febof 2005. Her MS got really crappy and she was diagnosed with Epilepsy. They say only 2% of people with MS have seizures but I find that hard to believe.

[Momzilla]

Hi, and welcome!  Are you new here?  

That must have been terribly scary.  Has that been her only seizure?  I would tend to agree with you that the estimate is low.  Why do you think it is?

Zilla*

[funmonkeytoes]

I think the seizure/MS link is probably an issue more related to the areas of demyelination in the brain....and likely not studied to the extent it should be.  The more I research, the more I find these two things to be associated.  

* dowma, Your history is quite interesting and unique.  I am sorry that IVIg didn't help you - in fact made you feel worse.  I have a theory about your post-IVIg infusion "shaky vision, nausea, and numbness/tingling in lower extremities".  Most (if not all) patients that receive IVIg are pre-medicated with hydrocortisone or some other type of IV corticosteroid; that could explain the jittery feelings and the nausea.....the numbness/tingling could just have been a clue that the treatment was not working for you.  

IVIg is definitely not for everyone nor every condition.  When I post [very soon] about my experiences with IVIg I'll delve into that a little deeper.  I continue to research and spend approximately six-eight hours a week just trying to find clues, explanations, and people like you that have unusual manifestations/disease processes/intensive testing.  Sometimes it takes a while to interpret scholarly articles and relate them to myself or other MS/MS-Limbo patients.  MS is so individual, but if you look hard enough there's usually more people out there than you could ever have imagined with symptoms or disease progression that is similar to yours.  That's why I appreciate your response to [any of] my post(s)........your input is extremely valuable to me, as is your support.

I hope to post my IVIg experiences soon.....I had a fruitful visit with the immunologist today and will be starting IVIg again NEXT WEEK!  I am excited and was quite surprised to get in so soon.  Hopefully things will go well for all of us as we continue on this winding path toward relief and long-lasting remission!  Thank you all again for sharing your precious info.  Keep me posted as to how things are going for you all!  Peace & Love!

Funmonkeytoes (Debra)

[dowma]

Thanks for the info.  I saw my neurologist yesterday for all my tests results from the hosp. 2 weeks ago.  VEEG was significantly changed meaning definately having seizures frequently some as long as 3 min.  He says there not your "typical" seizures whatever that means?  Last VEEG just showed sharp spike waves.  
LP and all labs were negative.  MRI  of brain showed no change from prior 6 months ago, few small white matter foci ( i think 2-3).  Neuropsych. was slightly worse.
He wants to continue my IVIG for 3 more months making it a total of 6 month course, feels I need to give it the whole run.  Also wants to start tegratol, which I'm nervous about because I had tried it over a year ago when I initially had abnormal EEG by different neurologist and was very dizzy.  So maybe I'l start tomorrow.  
Have to admit even though LP was negative not so convinced I don't have MS because of all my symptoms, numbness and tingling definately worse in right arm and leg pretty much constant and even painful.  Fatigue same but on occasion so so tired.  I wake up tired.  
Had C-spine and T-spine MRI almost a year ago which was negative, not sure if I should ask to have it repeated.  I feel silly because he is going to think I'm looking for something thats not there and I'm questioning his medical opinion.  
I didn't recieve any hydrocortisone prior to IVIG and had nausea and shaking vision several weeks after home infusion.  The nausea comes when I get these weird spaced out feelings.  
I really appreciate your support and advice I feel as if I'm at a loss here!!
Thanks (dowma) Mary Beth

[Momzilla]

I'm happy that you are getting the treatment you've been hoping for!  I am eagerly awaiting your post about the treatment.  It sounds interesting, to say the least!

Feel well and strong,

Zilla*

[Rena705]

Well Mary Beth, you have finally gotten some concrete answers by the looks of  your last post.  I just want to add some support here...the doctor said that you are having frequent seizures and you are stating that you are so, so tired, waking up tired.  If you are having seizures as often as that, you ARE going to be tired due to the seizures.  They take SO MUCH out of your body it is amazing.  That is more than likely why you are feeling so tired all the time.

As for the Tegretol, I have been on Tegretol since 1993 to control my seizures and I have to say that it is a pretty good med.  If you are having side effects,  you should let your dr. know but for the most part the benefits of the drug outweigh the side effects that generally do not last for long as your body is adjusting to it.

I wish you luck with controlling your seizures and I hope that the Tegretol will work as well for you as it has for me.

Hugs,

Rena705  

[Rena705]

So is your Mother diagnosed with epilepsy as well as MS?  This is what I get from your comment and if so, these are two separate diseases.  The epilepsy (if that is what she was diagnosed with) would be what is causing her seizures as a separate disease from MS.  

In my case however, there was no indication of epilepsy and the cause for my seizures was MS.

I just wanted to clarify that for you and explain that there is a difference between the two diseases.

Rena705

[dowma]

Hey Rena,

Thanks for the insight.  I did want to mention, that i have had fatigue, numbness and tingling and the other symptoms for almost 2 years now.  Way before I was even diagnosed with having seizures.  My initial EEG over a year ago just showed spike waves, now showing actual siezure acitivity.  
Sorry got the meds confused, supposed to start trileptal not tegratol.  Do you have MS  and seizures?
Sincerely,
Mary Beth (dowma)

[Rena705]

Mary Beth...if you look up, way up, at a previous post of mine in this same subject, you will see my post about how I presented with grand mal seizures and then was diagnosed with MS.  I do not have epilepsy and the seizures are related directly to the MS.  

In my opinion honey, I would keep a close record of all your symptoms from now on and keep in close contact with your neurologist.  Since the neuro said that the seizures are not "typical" I would think he would want to know why.  Please let us know how you are making out and what if anything the neuro says further about these "atypical" seizures.  

Take Care and Hugs,

Rena705

[dowma]

Thanks I'm so confused right now.  Thought I would have different results yesterday at follow-up.  sounds crazy but was hoping LP would show something.  I don't know what elso neuro. is going to want to do besides have IVIG for 3 more months.  He may want to repeat PET scan after that.  He seems pretty confident thought that this is autoimmune in nature but does not give diagnosis because he is not sure what type of autoimmune disease it is.  all rheumatoid and inflammatory markers were normal.  Who knows anymore just frustrated.  
Thanks Rena for sharing,
Mary Beth

[funmonkeytoes]

I started IVIg (my second try w/this therapy) on Feb 5th.....long infusion, total of six hours; but my first experience with IVIg almost a year ago -- I had a failed attempt of Tysabri in-between -- they did a "loading dose" which was TWO days and TWELVE hours, so I am not complaining.  The side-effects were identical to before - severe headache and flu-like symptoms that lasted about ten days.....which is why I have been away for a bit.  Unfortunately, I am already showing early manifestations of a rash I had on my previous try with IVIg in spite of change of the brand.  All of the posts I've read about seizure experience and MS lead me to believe it is not so uncommon for the two to coexist, and I thank you all for posting your experiences and insights.  Now, this is not relative to the MS w/Seizures post, so I am going to jump over and begin a new post about my experience(s) with IVIg - and where I might be forced to go from here if this rash is, indeed, caused by the IVIg (immunologist says in twenty years of infusions only TWO people presented with a rash.....looks as if I might be one more).  I am depressed, fatigued, concerned, and in need of a good pep-talk.  I am also in need of sleep!  Whoa.....look for my IVIg post to be completed soon, I'd love to share what I've experienced and am experiencing.  Peace and love to all.  Funmonkeytoes (Debra)

[dowma]

Hey Debra,

So sorry to hear that your not feeling well from the IVIG.  I had mine on Sat. the 9th.  they increased the dosage to double.  Boy did I feel lowsy!!! So I understand the headache and nausea.  I also previously mentioned that i had started trileptal for seizures, well that was horrible also the nausea was unbelievable waking me at night from a sound sleep.  Thats it couldn't take anymore called doctor now switching to Keppra.  Took first dose this morning, starting at a very low dose of 125mg twice daily then increasing.  
Please keep in touch and wishing you all the best feel better.  
Mary Beth (dowma)

[funmonkeytoes]

Mary Beth,

Wow, a double dose does suck.  I've been there too.  I hope you get to feeling better soon.  I have had two glorious days of feeling better than I have felt in months!!

I am glad that you changed seizure medication, and I pray this one will not wake you in the middle of the night wanting to barf!  

I am on my way to post some great info I found in my "favorites" about IVIg.  I would love it if you posted about your experience with it as well so we can let people know that, although expensive, it can really help people with MS and other auto-immune diseases.  I am all for sharing information.

Debra (Funmonkeytoes)

[Sonaya]

HI,
I have not been diagnosed with MS but in Limbo.  I was interested in your post because I am having the same type "seizure spells" related with alot of muscle twitching and jerking.  I am having an EEG tomorrow but so far all my other tests have shown nothing.
I just posted my "story" on another post but here are my symptoms.

Very Sudden onset of stroke like symptoms Sept 07. Only way can describe it was like something switched in my head, loss of hearing in one ear, blurred vision, speech problems, inability to think straight, weekness in legs, dizzyness, worst headache of my life (no history of migraines ever). All happened like a flick of a switch totally out of the blue. Suspected stroke, brain hem, meningitis. Test ruled out this. Mentioned Vestibular Inner ear problem, shingles,  MS, Lupus, Spinal Stenosis/disc compression.  OVer the months progressive symptoms of more blurred vision, motion sickness/vertigo, although not so much dizzy spells, just some triggers that can cause it,  facial numbness, tingling, pins & needle sensations, extreme muscle aches and pains and weakness. Loss of balance like Im going to fall over or my legs are going to give way. Stiff Neck,head pressure, eye pressure, ear & nose pressure like liquid filling up.  Clear liquid running out of nostril like CSF leak? Heat /burning sensations, chest pain (like angina)profuse sweating,  memory problems, just cant think like I use to, stare into space spells, extreme fatigue. Muscle spasms, twitching feet, legs, arms, face, eye, cheek, twitching with recent uncontrollable jerking mainly leg and arms, triggers similar to epilepsy seizures but not consistent. Unofficial diagnosis is Familial Hemiplegic Migraine with aura, although most of the time I dont get headaches, just the auras, yet sometimes I do.  The very recent symptom is palpitations in sleep with shortness of breathe. . Hot days seem to make muscle twitching worse, yet cold days make muscles ache & pain worse. So far all tests have shown nothing. MRI without contrast brain and spinal, LP CT Head, CT Sinus, Dopplar carotid arteries, ecg, heart stress test, bloods. Not seen neuro yet.  The one thing that got me about your post is how it took you 3wks for  your speech to get back to normal.  That is what happened to me after my first "attack" whatever it was.  I dont have slurred speach but its like my speech is affected and I cant get my words out and im all mumble jumbled and sometimes it just comes out like blah and Im very slow with it.

[funmonkeytoes]

Very interesting and quite scary for you.  Gosh, I was scared silly this last time because (unlike most seizures) I was aware of what was going on the entire time.  My first two experiences were like losing time and then not remembering anything that had happened for several minutes.  If I had been alone -- I would never have known....maybe I am having seizures I don't know about -- but my EEG (after my first two "absence seizures") was normal, and this last one was chalked up to being an MS flare.

I don't know what to say except maybe you should post this where you will get additional attention 'cause it sounds like something you shouldn't ignore and it's not getting better.....like stroke symptoms, but with MS symptoms in-between.  I am no physician, but I'd certainly take this seriously and keep looking for an answer.  As a patient myself, I'd say to keep looking for a doctor that will dedicate him or herself to helping you find out what's going on.

I do have a friend with MS symptoms (but undiagnosed) that has been to the Mayo Clinic...they said she was having migraines - but without the headache.  Weird.  I'll get her to take a look at your post and see what she thinks...but copy and paste this as a new "question".  I'd like to see if there are other people here that can help you more than I can with their personal insight/experiences.  I hope you get some helpful replies!

Good luck, and I'll keep my eye out for your re-post, see what the rest of the MS Experts have to say.

Funmonkeytoes...or just Debra