Seizures and possible MS

[Tired of it]

I am 34 now but 8 years ago I was under much stress.  Then I started having grand mal seizures 5 years ago.  I have the grand mal seizures under control but I still have episodes with my stomach and head feeling dizzy.  That lets me know to WATCH OUT!  A staring spell is coming sometime in the days ahead. I will stare and my mouth will chew and I will be unable to respond. After,I am feeling badly for days and everytime I eat I become dizzy and tingle all down the left side of my body.  Other than that, I have been fatigued for years. Now I have a hard time having enough endurance just to due my daily duties.  Lately I also have a hard time getting some sleep, day or night. At times I do have a light tingling on my left side not due a seizure. I also have some spasms in my toes and hands. Lastly, I have shooting pain in my legs but not often. My biggest complaint is that I feel like I am usless because I am so tired ALL THE TIME. I am not depress though. I have been to several neurologists. I had many MRI's, blood work, evoke-potentinal and a spinal tap. Nothing showed up but the MRI. Some plaque showed up and because of that alone the doctors said it is MS.  I am not convinced so I have not started any medicine for MS. Do you have any suggestions or know what is going on? One doctor even said this is the strangest case and he has ever seen. (But all the rest said it was MS.) Help please! I am so tired of being tired. I cannot even enjoy my children like I want to and be a real MOM and enjoy their activites.  Thanks for your time!!!

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    The symptoms and story you describe is most consistent with temporal lobe epilepsy.  The abdominal feeling followed by staring and lip smacking is classic for temporal lobe seizures (complex partial seizures).  Further, your left sided tingling suggests that the right temporal lobe or at least the right side of your brain may the origin of your seizures.  The "plaque" that showed up in your MRI, generally refers to a ring enhancing mass.  The presentation that you describe is Not a typical presentation for MS.  MS can be associated with seizures, but usually only late in the course of the disease.  This "plaque" in addition to possible MS, may also be a tumor, or infection in your brain, that Would present with a new onset seizure disorder and Would cause constant fatigue.
I am sure that you have had some seizure workup, but I would recommend a prolonged EEG to capture one of your staring spell type seizures (may take 3-7 days in an epilepsy monitoring unit) and to see if your seizures are coming from the same area of the brain where this "plaque" is located.  If so, you may need a brain biopsy, excision to understand what is going on.
   New presentation MS does often involve contstant fatigue, but not often new onset seizures.  You should insist on a comprehensive workup.
I hope this has been helpful.

[pneeb419]

WOW!!!  I will be very interested to read what the response to this is going to be.  I am having very similar problems.  Except that I have just recently been diagnosed with RRMS, though I am beginning to think that it's PPMS. (I am having a difficult time getting on this site to post a question) For the past month (atleast) I have been having a very difficult time getting restful sleep (most days it's just 1 to 2 hours at a time)....have been caught sleepwalking a couple of times. PCP thinks that I 'might' be having mild seizures but my neuro is doubtful. But it makes sense to me. Having an EEG done tomorrow.  Good luck with finding the cause!!

[Mezazinine]

That's the problem with neurologists. They see white spots on the MRI and instantly shout MS even though nothing you said particularly suggests that is your problem.

[bonbon1981]

Hi,
I am so sorry to hear what you are going through. I am a 24 yr. old female, 25 yrs old this month. I was recently diagnosed with mild symptoms of Multiple sclerosis.
Since I was younger I have had about 4 or 5 seizures through my life grand-mal/peti-mal seizures.
since I was younger I have had a hard time functioning with doing things, hard time understanding.
I have always had tremors in my hands, sometimes my body is shakey. I always have the hand tremors, sometimes it gets so bad, I can't really do anything.  
I also have such a hard time doing math (I'm only at about a 3rd grade math level).
I have problems neurologically with my brain.
Growing up I was always told I have a traumatic brain injury, seizure disorder. Nobody was really sure what exactly I had.
This last year, I started seeing a new neurologist. at my appointment he did an evaluation. So then He wanted an MRI done on me. I did have the MRI done, there was evidence shown on the MRI. my dr. told me I have Mild Symptoms of Multiple sclerosis. I had some idea that I had Mild symptoms of MS, wasn't sure until the MRI was done.
Some days I feel pretty good, & other days I feel not so good. I have some of the same things happening to me as you have to you. Sometimes I stare off for no apparent reason. I also feel tired sometimes, & not want to do anything really. I have also had the seizures. sometimes my coordination & balance are a little off. I get also get confused as well.
I get nervous very easily, & I will become shaky more easily.  
With my MS. my symptoms can be there then they will go away.  
you most likely have mild symptoms of Mulitple sclerosis.
I haven't had any blood work done, or spinal tap done, like you have. I did have the MRI done & it showed Some plaque on my brain, like yours did.
My dr. said if mine gets any worse, he wants to do a comparison MRI. But for now I have the mild symptoms of multiple sclerosis.
As of now I don't drive, & don't work. My husband & I are going to try & get me SSI, to help out with my medical. I haven't worked in my life, so I can't get any money, But we are hoping I can at least get the medical part. Later we are going to maybe get me a driving instructor to help decide if I am able to drive. My dr. said he could put something like I have some kind of brain injury (I forget what exactly). Hopefully that will help.
Right now I am not on any medication, my dr. did perscribe me some medication I forget what it is right now (some kind of heart medication), just in case I get feeling really bad; I can take it. But lately, I haven't needed to take any medication. I have tried to be as relaxed as possible.  
I am so sorry about what you are going through.
I know you don't want your dr(s). to dianoise you with anything at all, that's the scary part of it all.
With me I was more relieved to know I had the mild symptoms of MS, before I had no idea at all what I had. I had all of my drs. telling me all these different things. All my life I have grown up having all these things wrong with me. Now I know what it is.
I guess that's about it. I hope I helped you out a little bit. I hope I wasn't 2 confusing, sometimes I guess I can be a little confusing with what I write; it's just how my brain works.  

[Tired of it]

Thanks for your comments.  It has been a real help to me and I am going back to the doctor this week.  I need to know what is up because this stuff is really hard to deal with!  Wish me good luck.

[malaparte]

I've had epilepsy fro 50 years and cannot jack it totelaty. And under control as far as grand gal(KNoock on wood), up with some up of pet mal where all of a sould, either in from of the computer or out side, I think can't might. So chun in groups and which now I am in one where it writing this letter is  free  a chourch. I will go which of seicures for several weeks and then haph 6-10 grouped together.

[nokaoi]

A female friend of mine (age 43) started having seizures 2 yrs ago which have progressively gotten more frequent  (sometimes 4-5 a day now)  in the beginning she had them maybe once a month or so. She was in excellent health up to this point.  She has went to many doctors in our region of Florida and has not been able to find a doctor willing to do research to find out exactly what is wrong with her.  She has had 24 hour monitoring at Birmingham and Jacksonville....but no grand mal seizures were recorded but the small ones were recorded and she was told those were not the type of seizure they were looking for.  She has had 4 doctors advise her she is pretending, doing illegal drugs, needs a psychiatrist, etc.  When they can not diagnose her they try to get rid of her by insulting her it seems.  This is only a fraction of what she is going through (been through).  I want to help her get her life back; right now her family has to be with her 24-7 because when she has seizures now she stops breathing and requires resuscitation.  She can no longer drive and can't be left alone for even 5 minutes.  This is taking its toll on her husband and 2 young sons.  Please can you help her? Can you provide me with some suggestions on where she can go to get help?  She went to the Mayo clinic in Jacksonville FL and they did nothing for her but told her to go home and quit trying to find answers and start working on how to live with this......I am so upset about this because it seems in this day and age someone, somewhere must know what is wrong, how to find and fix it.....the docs she has been to so far don't even want to try.  Please can you help us?
Thank you