Hi Ellie,

Thank you!
I have had regular CBC's (not sure if that would cover the pernicious anemia or not), and everything has been fine, with the exception of the slightly elevated lymphocytes.
I have not had an EEG. I would love some more information on your personal shock-seizure connection. I have some questions, like...how long did your shocks last? Were you having other "common" seizure occurances, such as post seizure fatigue, etc? I find that very interesting!

Thanks so much
Christine

Your doctor would need to go beyond a CBC (in some cases those could be normal, and some people won't even appear to be anemic). Have they done a rheumatoid factor and all of those tests (forgot the names) to check for inflammation and things of the like?

Regarding my seizures, there's a few things that can happen. So I'll give a few example.

What I consider my 'aura' is usually a headache and/or tingling in my fingers which gradually moves up my arms. Sometimes it's numbness. Within around 15-30 minutes I start to have the electrocution. Sometimes it's off and on, and sometimes it's so severe I can't move.

My worst one, where I actually thought I was dying went like this. It started with tingling, and once it made it up my arm I had this static feeling going from my head down to the bottom of my back. Like a cold chill but felt more static-like. After that, I felt shocks from my head down my back, and from my feet up my legs. I eventually couldn't see at all, or speak (where before I'd be off balance, dizzy or have blurry vision). I could not move. I woke up from that episode around 3-4 hours later, and I'm not sure if I freaked out and passed out or if it went into a full blown GM seizure. I was fully coherent during every 'stage' of it up until I fell asleep, passed out, or whatever happened. I was talking to myself in my head to remind me I was alive. :o

It wasn't until that episode I took the shocks seriously and told my doctor to find an answer. After several tests and a lot of reading, the blame was placed on those two lobes.

I do have drop seizures, too. But they are very rare. I haven't had one in quite some time and I am also not taking medication for my seizures anymore. I made some changes in my diet, my lifestyle and also learned to document my episodes. All of my worst episodes happened the day before I started my period, sometimes a few days before. After months and months of tracking, I blamed my hormones. I decided since I can't have kids anyway, to take constant birth control pills to completely stop my monthly cycles, ever since doing this - my episodes stopped.

That was clearly not the case for others who suffer from this type of epilepsy (they actually call it a syndrome in formal medical terms due to it's rarity, and it's in french or something whacky so I really don't know the name). I like to call it "Lobe Hopper", I think it's catchy. I think they said only around 1% of people with epilepsy have this type.

Between us, and everyone else here. I think if more doctors knew the signs of these seizures, the number would go above 1%. When you think shocking pain, you think nerve damage. It's hard to find doctors who will go out of their way to find the missing links to give you a diagnosis that truly helps you. I had to get my doctors (I call them Team Ologist) to work together to find common links, to find what started it and stop it.

To answer your other question, I was severely fatigued after each seizure/episode. It's really exhausting. It kind of stinks you have to go through so much pain to get good sleep, but it's really the only time I slept well.

The link I gave in my previous post will explain a lot about the parietal lobe and occipital lobe seizures, as you read more you'll see how drastically different they can be thus resulting in it being very complicated to diagnose.

I really do think you should just tell them to check your B12, horomones, and all of that good stuff. It's not fun, but if you can get one big round of the labs done in one day it can help to eliminate a lot of things it may be at once instead of them doing one test and saying, "No" then a few days later doing another and another.

Right now I've had more auras than anything, which I can only assume is due to the Lyme disease as I was feeling quite fine up until the symptoms of my new infections started to arise. Being able to control seizures seems to be pretty random and varies by person and severity from what I've learned.

I hope you find answers soon, just keep pushing for them. :)

spascisity in one calf? how does that work?
It sound like you could have any number of neurological problems....most of which are likely to be untreatable. How old are you, when did the symptoms start?

Thanks so much Ellie, for all the info! I have had the Rheumatoid factor tested, the ANA, blah blah blah, all that was normal :confused: . I have been for several rounds of blood tests...lol after the stupid scope, they don't bother me at all. (The endoscopy was my biggest fear, medically speaking).

Micheal,
Spasticity in 1 calf indeed. One leg is always always tight, like it's about to charley horse, but thankfully, hasn't caused any gait problems. It's just there. I don't know why, I am just the patient. lol
I'm just shy of being 33 (married, 2 kids), and symptoms started about 2 years ago (1 month after the birth of my youngest child), with electric shocks in my left calf (happened on and off repeatedly all day), and progressed to other places, after a few months. Fingers, forearms, over the collar bone, up my neck towards the base of the skull, "shooting out" the eye, back of the head through the temple, even toes. Then from there, one by one, things started to fall apart, with it climaxing at the beginning of August with the inability to swallow solid foods.
The barium swallow indicated an esophageal web, so they did an endoscope to dilate it, but when they got in there, there was no web or blockage of any sort, which is what makes my doctor think it could be spasm.
When you say "untreatable" are you meaning "untreatable" Or "incurable"?

Christine

You can cover the B12 possibility by taking a B12 (at least 1000 mcg per day, in case you are approaching severe malabsorption) in a form that dissolves in your mouth.

I do hope you read my website (quick and easy). B12 deficiency may or may not be your problem, but most docs have no clue how to diagnose it, and as pointed out above a CBC doesn't show a thing for a large percentage of those with damaging deficiency.

rose

Electric shock
 

Christine did you have an epidural with the birth of your child? Sometimes damage can be done with an epidural that would cause your symptoms.

could also be
 

Lyme disease, Babesiosis.

there is Lyme in Canada, do a Google for Canada Lyme they have a great site, very informative.

Have they also done two blood tests ...
 

that could help zero in on things? One is a CMP [complete metabolic panel] that can hilite those aspects you've too much of or too little of [tho get a copy of the test results for yourself? Docs only pay attention to the 'asterisked-*' results, not the marginal almost asterisked results. And have they done any auto-immune testing?
I suggest that you web up the following web sites:
This first tells you what a GOOD neuro exam SHOULD be
http://www.neuroexam.com/content.php?p=2

and this second, tho related to neuropathy covers a whole slew of other aspects about neuro issues that could/should be eliminated:
http://www.lizajane.org/

I do hope this all helps you get to the root of all the pain. - j

When they "checked your thyroid", did they check the thyroid antibodies, too? My hormone levels were always normal for 8 years, but I had symptoms very similar to yours...

My 8th- yes 8th neurologist, a subspecialist, checked me for something called Hashimoto's Encephalopathy (HE) by checking my thyroid antibodies- mine were sky high! And an ultrasound of my gland showed it to be full of tiny nodules!!!!

HE is also known as SREAT- steroid responsive encephalopathy associated with autoimmune thyroditis, since it gets better with steroids.

The vast majority of doctors have never heard of it, and doctors are trained to check antibodies only if the hormones are off first- a real tragedy here.

So, you might have to beg to get your thyroid antibodies checked. Remind them that your mom has thyroid disease, since these things are often genetic!