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!