Cause of Strange Neuropathy - Ideas?

[barnabybrown]

Hi, I've been suffering from some neurological episodes for the past few years.  The
symptoms started by being very occasional and rare, perhaps once a month and
have slowly built up to 3-5 times a day now.  Here's some detailed info:


Symptoms:  In order of occurrence:

Feel hungry, jaw loosens, general lethargy, lower facial muscles relax, trouble
articulating lips, muscles around eyes relaxes, shallow breathing, confusion, difficulty
thinking and speaking, dexterity in the hands goes, general weaknes all over body, feels
like body shutting down.

Both friends, family and doctors have witnessed these attacks.

Episodes are stopped by eating something, and can also be prevented by eating A LOT
and very regularly, say once every 1.5hrs, but cannot be stopped by a high glucose drink.  

Sometimes if I can't get to some food i will also have a rush of adrenalin and panic...
however, these are secondary.  I don't ever have palpitations or adrenalin leading up to
an episode.

I often get pains just below my bottom right rib that coincides with the attacks, although
this is not always consistent.

I also suffer from general underlying lethargy constantly.  

I have regular bowel movements.  But I don't get episodes, or the episodes are really
reduced if I get constipated.
  
Other info:  

I have/had a heart murmur/hole in my heart.  
I had an intersucsseption when I was 13 months old.  No bowel removed.  
My tummy is very sensitive and can become constipated and swollen very easily.
I didn't get an episode for 48hrs when I took vitamin b1, b3, b12 and folic acid supplements once,
and my lethargy completely disappeared.

Tests carried out so far:  All test came back normal.

Blood glucose levels (both during attacks and after fasting), calcium, sodium, potassium,
magnesium, liver, kidney, Vitamins C, B12, B3, bone density, thyroid (TSH, T3, T4),
EEG (including epilepsy tests), ECG, and nerve conductivity.

Has anyone got any ideas at all?

Thanks :)

[barnabybrown]

Thanks Sadie, but my symptoms don't correspond with POTS.  Had my stats monitored for days during and outside of these episodes and my heart rate doesn't fluctuate, blood pressure is fine, and I don't get any dizziness at all.  Also makes no difference whether I'm lying down, sitting, standing, whatever.

Actually the question about parasites is quite reasonable i think and serious enquiry.

It is well known that parasites can target and effect the CNS of various animals.  A classic example is a parasite in ants that makes them crawl to the top of the longest blade of grass they can find, so they become easy targets for birds searching for food.  This is because the parasite's aim is to continue through the food chain.

There are other examples too, worm eggs entering the blood stream and reaching the brain causing various neuropathy being another.

[SadieSunflower]

I have had many such spells. I have autonomic disorder called POTS. Eating can help relieve symptoms because 1. I am sitting down when I eat and 2. The electrolites in the food help to balance my heart rate an blood pressure. I highly reccomend that you do do some research on POTS and orthostatic hypotension and have your orthostatic vitals taken.

I don't know about bugs but you're not winning youself any sanity points by bringing it up.    

[barnabybrown]

Thanks for your thoughts.  ECG and Nerve conductivity suggest nothing wrong with muscles themselves.  Also the weakness that I mention isn't a physical weakness, as movement, resistance and reflex tests carried out during the attacks are all normal and show good strength.  It would appear that it is more a control thing, where the messages just aren't getting there than anything actually wrong with the muscles.

Have had EEG and glucose tests during an attack and are normal so think it's safe to rule out any form of diabetes and epilepsy.

Regarding the Mitochondrial stuff, would I need to see an endochronologist for anything to do with mitochondria?  what else could an endochoronologist check for or look at?

Also, someone else mentioned being tested for Lymes, do think this is an option, my neurologists didn't seem to take me seriously when i asked about?

Also what about the possibility of it being worm related.  It would explain the fact that i hold a constant 56Kg of weight, even though i eat enough for 2 people every day?  I also read somewhere that if worm eggs get into the blood stream they can cause strange neurology.  what do you think about this?

Thanks :)

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not give you a diagnosis. Your symptoms are multiple, and one unifying diagnosis is difficult to invoke. You seem to have had an extensive workup as well that has been unrevealing. However, in general, there are few things that come to mind when one hears of episodic neurologic symptoms in general and a few that come to mind when one hears that the symptoms improve with eating. However, your symptoms are not really typical of these disorders, and please understand I am not trying to suggest I think you have any of the diagnoses discussed below.

One cause of episodes of jaw loosening/lower facial muscles weakening etc. could be myasthenia gravis, a condition in which there are antibodies (antibodies generated by the body against itself) against an area of the muscles. Symptoms could include fatiguiability of eye and face muscles (as well as other muscles) with use (such as chewing, swallowing, talking) that improve with rest. They would not typically improve with food. Diagnosis is by blood testing, though an EMG/NCS (which you have stated you have had) could be used in the diagnosis too.

Another general group of disorders that could cause episodic neurologic symptoms related to food intake is a broad group of disorders under the realm of mitochondrial disorders. These are sometimes difficult to diagnose, a genetic/mitochondrial specialist would need to order specific tests, and sometimes testing will only be positive during an attack.

There is a group of disorders called the episodic ataxias which really cause intermittent problems with walking. These are genetic.

The possibility that these are seizures does exist but it is very low. An EEG taken during an actual attack of symptoms that is completely normal would completely rule epilepsy out. if the EEG was taken while symptoms were NOT occurring, there would still be a small chance that these are seizures. Similarly, if glucose checks are not taken during an actual attack, it is possible your symptoms are related to low blood glucose.

Continued followup with your neurologist is advised.

Thank you for using the forum, I hope you find this information useful good luck.

Thank you for using the forum, I hope you find this information useful, good luck.

[barnabybrown]

Anyone?  Any doctors in the house? :)