Desperately looking for ideas/thoughts
 

I understand no one here can diagnose, I am just looking for ideas and thoughts, things to approach my doctor with.

My symptoms started in November'05 (one month after the birth of my youngest child) with electrical shock like sensations in my left calf. To date, my symptoms now include:

*electric shock-like sensations, body wide (although only in 1 place at a time)
*vertigo spells
*overwhelming fatigue
*weakness in my arms and sometimes my neck (where holding them up is hard)
*tremors in my right hand (periodically)
*fasciculations (or maybe myokymia, not sure which) in legs
*myoclonic jerks (very mild, only once or twice a day)
*a month of not being able to swallow solid foods (they stuck in my throat for over 24 hours)
*cramping in the arches area of my feet (left is worst)
*spasticity in my left calf
*dropping things
*micro-tremors (where I feel like every bit of me is tremoring, including my eyes, but none of me is actually moving)

So far, medically, I've had:
CT Scan (clear)
Brain and C-Spine MRI (clear)
Endoscopy (clear)
Numerous blood tests, all clear, except for a chronicly (18 months or so) elevated lymphocyte count (WBC has been normal though), slightly elevated liver enzymes, and slightly elevated blood calcium level.
My PCP thought MS at first, sent me to a neurologist, who has basically determined that I am not sick enough to run more tests (aside from the MRI he ordered) at this point. I'm in Canada, so I can't just go to a new neuro.

I'd really love just some ideas! ANY ideas! I'm at a loss. My family doctor is at a loss.
Any help, thoughts or ideas would be well appreciated.

Christine

Well....the throat's gone again. One can't complain I guess about the luxury of being able to eat for 6 whole weeks.

Man, I'm completely overwhelmed.

Christine

I know you said you had blood tests done and they all came back clear but did they check your thyroid? I had problems swallowing and still do on occasion, cramping of my feet and legs. Shaking, tremors, extreme exhaustion. Those were just some of the things I experienced. Have them check it out if they already didn't. Good luck to you.

Thank you Towie, yes my thyroid's been checked twice. My mom has Grave's Disease, so we tend to stay on top of testing it, just incase.
Thank you for the thought though.

Christine

You can cover one important possibility by getting at least 1000 mcg oral B12 per day (not timed release).

Please read my non-commercial website. It won't take you long, and it is very important information. If malabsorption or some other cause of B12 deficiency is the problem, damage will continue until you get store building back up. And most docs do not know how to diagnose it or to even begin ruling it out.

rose

At this point, I can't even swallow pills, so that will have to wait.

I'm thankful I have been through this before, and because of that was taking my neurontin on an "as needed" basis, so I wouldn't have to worry about suddenly stopping it, again.

Christine

Your symptoms are so widely varying that they could be signs of so many things--- AND possibly several different things combined. So, given the tests you've already had, I doubt there will be one single test that will determine what the possible causs, or causes, of your symptoms. The only two things that come to mind-- test wise, are an EMG/NCV and a Nuclear Bone Scan. Neither test will provide nor have the possibility to provide even, a clear cut answer for all of your symptoms.


The thing that struck me, was in your very last post where you mentioned you had been taking Neurontin on an intermittant vs constant basis. The thing with neurontin and most other meds that effect the brain and CNS is that you won't see or can expect to see much, if any, benefit from only taking it on a PRN basis. I am on 2 AED's (anti epilepsy drugs) for my seizures ; and just started Neurontin a few weeks ago for nerve pain and know from 14 years of experience (i've tried 10 AED's for seizures and a few more for nerve pain over the years) that they do not work overnight. It took me about 3 weeks to get to my goal dose of Neurontin (granted thats a long time, but i am so med sensetive I have to take things very slow) and the doctors have told me that 1) it will take a few weeks, once I get to my goal dose, to see the full effect of it and 2) in a slightly different note, it will take some time for the side effects to dissapear. This is on a continued basis--- I can't imagine that drug would be fully beneficial if not taken on a regular basis; nor would any possible side effects go away. It takes time.....

So, another thing I am wondering is that if you are still on neurotin or another medication, that some of your symptoms could possibly be side effects.

A way around pills is to get vitamins and medications in either chewable or liquid form. I have difficulty swallowing big pills too, so with my multi vitamin I take 2 children's chewable vitamins; along with any extra supplements I need (currently Vitamin C and Folic Acid).

Hang in there !
L2L

I had Graves disease too, that's why I suggested that. I also have a problem with my homocysteine level which, if you haven't been tested for that, you would want to be tested for it. There is another link here that Rose has provided and contain a lot of useful information about it. The symptoms are vast and can be very damaging. I would suggest reading the links if you haven't already done so. I take vitamins with folic acid and b12 and hopefully when I go back to the hematologist my levels will be reduced. But I am feeling much better since I started taking them. Good luck and feel better.

L2L,

Thank you for your input. I WAS taking neurontin on a consistant basis, 1200mg a day, until my throat suddenly stopped working at the beginning of August. I couldn't swallow anything at all for a month. So when I slowly started to recover from that, I hadn't regained full function, but about 75-80%, which made me a bit nervous about going back on the neurontin on a full-time basis. I had been fortunate the first time, and hadn't had any ill effects from stopping it suddenly, but I'm leery about taking that chance, as I have 2 small children to care for. I had been taking neurontin for about a year before the throat went haywire, so I would tend to lean towards it not being a side effect, but am thankful for the thought. I am not taking any other medication right now, but am looking into trying peppermint oil to try and help with, what I suspect may be esophageal spasms (causing the dysphagia).

Chewable vitamins aren't much of an option either, since even when you chew them, you swallow them in little chunks, which don't go down. Liquid vitamins are definately a viable option though, and I'll have to look into them.

I do completely understand that 1) we could easily be dealing with a combination of illnesses, which will take time to sort out, and 2) tests, in and of themselves are unlikely to give conclusive, definitive answers. I asked my PCP about an EMG, and she felt that if it was warranted, my neuro would have ordered it. We've talked a bit about LP's, and she's willing to do one, if I want her to, but she doesn't think it will contain any answers, so I have put that on the back burner for now, but left it open so that if I choose to, at a later time, I'll ask her for it.

Frankly, I'm at my wit's end now. I'm ready to make an appointment to see my neurologist, and give him an choice: "treat me, or pass me on to someone who will". I have a PCP that I LOVE, but I'm done with all this. As it stands right now, I have a psych eval on friday "just to gain a different perspective", and that's it. Nothing else planned, at all, which is very frustrating. This all started 2 years ago, with a shock-like feeling in my left leg, and over 2 years I have made a slow progression to here.

I'm sorry, I'm ranting. I am just coming undone at the seams here, and starting to feel desperate.

Thank you everyone for your input and thoughts!

Christine

That's a wide range of symptoms that could be all related or not. Have you been checked for a B12 deficiency (or pernicious anemia)? Also, have you ever had an EEG? I know from personal experience, the parietal lobe can cause those electric shock sensations and if it's 'bouncing' off of the occipital lobe, visual disturbances can occur. This was confirmed with a EEG showing seizure activity in both lobes in my case (instead of having a GM seizure that many are more familiar with, I was experiencing the 'electric shocks'). When I was tested for what was 'shocking' me, they also checked for Peripheral Neuropathy.

Wish I could help more :(

Hope you find answers soon!

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!