For Limbo-Landers....

[spastic]

  Upon motivation from a friend here on the forum.  I would like to share another piece of the puzzle.  My neuro told me I have a seizure disorder which is causing the muscle spasms, the falling down, etc.  I was told that part of my brain affected (he didn't elaborate) controls my muscles.  When he told me it made sense, now I can't make sense of what he told me.  Go figure that one.  Well anyway, I know some of you here can relate to me and the symptoms so I thought I would throw this out there.  Knowing I do not have MS does not change how I feel about anyone here, I will always be here for everybody.  Love to all,

Spazie Ada

[young at heart]

I'M GLAD YOU ARE GETTING SOME ANSWERS.

TO MY UNDERSTANDING NEURONTIN IS FOR NEUROPATHIC PAIN,WHY ISN'T THIS NEURO TREATING YOU FOR THE SPASMS.

THERES SOME VERY EFFECTIVE MEDS FOR THE MUSCLE SPASMS,
BACLOFEN,ZANAFLEX,VALUIM,ATIVAN,QUALIQUIN (SP)

THESE MAY GIVE YOU SOME RELEIF.

JUST A THOUGHT

T

[Rena705]

Hi Spaz, I am sooo sorry for taking so long to talk to you but I am partly in shock I think...  

I am afraid that it doesn't make sense to me either if you are on Neurontin at that high of a level, why do they call what is happening to you seizures?

I, myself have been on Tegretol since about 1994...so why am I having all this nerve pain all of a sudden when I have been taking a drug that is supposed to help with this type of pain?

When is your next appointment with a neuro then?  Do I have all the story or am I missing a page or two?  I am concerned about you Spaz...you are not yourself at all and I think we need to know what you need so we can try to help honey.  Maybe that is impossible but like I said...I am worried

Love from a friend looking to help...

Rena

[ELT]

Sorry I WISH I understood the human brain.  It makes, however, NO sense at all, the things it does to us.  I don't understand how my body changed the seizures it was having, stopped them, started different ones.  I don't understand all these ms symptoms.  I'm learning.  I always hope that me typing something in here may start someone thinking about something that may help someone.  It reallly is an amazing site.  I hope other people will have more pertinent things to say, to help.

Good luck with it ada, dumb seizures.  ;)

Erica

[spastic]

I just don't understand it, can myoclonus seizures go on forever?  I have had this spasm in my lower back hip area for 9 months now, can they just keep going so quickly I can't tell if they stop? I take 2400mg of gabapentin, do I increase the dose?  To me it just doesn't make sense. Thank you guys for responding, I appreciate it very much.

Love,

Ada

[ELT]

Sorry, I did have another point.  The seizures that used to cause me to stumble, fall down, slur my words etc, feels nothing like now when I'm stumbling and slurring my words and all that similar stuff.  I felt far off when I had those seizures, I was aware, but apart from my body and those around me, I was in a different place.  

Now when I stumble, jerk, slur, twitch, and lose it, I'm aware, I just have no control over my body.  It's different, or it is for me.  

Sorry, about the seizures they are not nice.  Hope they can do something to control it for you.

Erica

[ELT]

I have a seizure disorder, or HAD one.  I developed it out of nowhere in my mid to late twenties, psychomotor and simple partial or something like that.  I was always aware, but, couldn't communicate, or function.  Treated them for a few years with different meds, didn't like the meds, stopped them.  I was fine.

Met my bf of the last ten years, almost, and proceeded to have nocturnal grand mal, or tonic clonic seizures.  I was scared of the meds, so I put up with the seizures every two weeks, 'til my bf threatened to leave me if I didn't seek help.  So, I did.  I took meds, and then began having lots of weird sensory stuff, they had already investigated me for ms, twice.  They presumed it was an allergic reaction to the new epilepsy med.  So, since I was having neuropathic pain anyways (they didn't call it anything, but, it's the ms hug and bilateral trigeminal neuralgia and bilateral meralgia paresthetica), they used gabapentin, for the seizures AND the neuropathy.  

It made me ill.  I stoppe taking it.  I was fine.  I haven't had a seizure in three years.  I have had neuropathic pain, I've used the gabapentin, til my dose was too high for my gps comfort, and then lyrica.  I'm in an okay space right now, pain wise, so I'm not on anything.  

I get jerks in my limbs.  My shoulders and ribcage too.  In fact, my hand just jumped off the computer table, mouse in tow, LOL.  

My neuro did sleep studies, eps, all sorts of things, eegs, the only thing that showed, was on the eeg after sleep deprivation, a slight epileptiform activity in my left temporal lobe.  So, if my brain could withstand years of grand mal seizures, five in one night, and show barely anything, on the stronger of tests, no wonder it's showing no lesions yet.  

phew, sorry for the rant on your post.  

Erica

[Jenn0030]

I have epilepsy, have had it since I was a teenage.  I have a history of the muscle spasms due to the epilepsy.  The are called myoclonic jerks or Myoclonus.  It is just that a twiching of a group of muscles.  I don't know if this helps, or if I can.  I have been controlling the seizure disorder for approx 18 years.

Let me know if you need anything

Jenn