Autonmic neruopathy definately affects balance - with no sensory nerves in my feet and legs propeciaition is gone - but the autonomic component affects blood pressure (stand up and pressure doesnt comply - you sit real fast!) Also, I literaly get vertigo from the autonomic - I had tests on my ears and they are out of wack (although I can hear a fly a block away) the nerves that control balance in my ears are way out of wack, and the docs say again, its nerve damage... (autonomic hint here - NIGHT LIGHTS!!!)

You remember the song, "I'm so dizzy....." - I still put that on sometiemes just to laugh at myself....

Wow, didn't connect the numb feet with balance.

Mine aren't numb. They just burn once in a while.

Will continue my Methyl B-12 regimen.

Thanks for all info.

Melody

P.S. One question please, the doctor told Alan (and I've heard from others), that IVIG helps with balance. How does this apply, if Alan's feet are still numb?? I mean, what exactly does the IVIG do? Doc says it has nothing to do with pain, just immune system and balance. This is all quite confusing.

Hi Mel

Balance is a complex endeavor. We use our senses to balance. What our nerves feel at our joints, not just our feet, but all of our joints, including our intervertebral joints, gets transmitted to the brain to sort out. There is our vestibular balance system in our inner ear, and our proprioceptors in our joints....plus our visual input, and what our body touches, as well as how our body 'feels' itself in relationship to objects around us.

So the info has to get to the brain correctly...If your nerves don't sense it, or your nerves don't transmit it, then your brain doesn't get it...Think morse code...

Ok lets say your brain does get the info....then it has to process it.

Then let's complicate it by adding in baroreceptors and chemoreceptors, that sense our blood chemistry and blood pressure. As kmeb mentioned, if you have the type of PN that comes with AN or autonomic neuropathy, you do not maintain your blood pressure reliably when you stand up too quick or you stand up too long....pretty soon, your heart isn't pumping as much blood, because it went to pool in the splanich bed or pelvis or feet.....and then guess what comes next......brain drought. Your brain isn't getting enough blood and oxygen to operate....that lasts a very short while because if you do not sit down....your brain makes you fall down, then your blood can reach it without pumping uphill.

Now let's say that blood does get to your brain, because you don't have AN...your brain still has to interpret all that data...such as where is my toe, where is my arch, where is the medial aspect of my left ankle in relationship to the right, in relationship to where I am on the gait cycle...should this leg go forward, should this leg go back...and on and on.

We don't think about this. If you have ever had to recover from a head injury or stroke, you DO have to think about it....consider the difficulty of it...consider learning to move the muscles of your mouth to speak again!!

Well, lets say it all makes it from the foot or hand or where ever to the brain....(and it can be about more than balance, it can be temperature-do I sweat or not sweat-do we dilate vessels or constrict etc)

Anyway, lets say it all gets there OK, and the brain is on target...it then has to send back a message that says....move this part or that part, or sweat, or pee or poo, of course it does this through code...the code? Neurotransmitters and receptors for those neurotransmitters, and things can be off at either place.

So all this complex chemical-electrical activity goes on and we have the body right itself and move itself in space, in relationship to the objects it sees, hears, and feels around it.

How does IVIG help? No one really knows.

New studies out suggest it helps Alzheimer's.

It helped me feel less 'dizzy'. I did not 'gray out' as much. I stopped feeling like my vision was at the 'waterline' of a pool. My ears stopped ringing off and on and my vision would get very clear.....

It did not appear to affect my body's production or reaction to acetylcholine, which was, what they were watching at the time. My neuropathy was not halted by the immunomodulary effects at that particular point in my disease...at least not in the 'clinically demonstratable' sense. It might have made a big difference to how I felt, but that has to be justifed by clinical evidence...

I am lucky enough to be a bit of a personal guinea pig. It has advantages and disadvantages, but I think I have some good minds opining over my physiology. So I let them worry about how all this math and chemistry works....I tell my doc how smart he is all the time....he tells me I am smart, but I say, 'not as smart as you-get to work!!"

If I had their brains, I would not be on here now.....I would be in the 'islands on vacation', mulling with a margarita, which I can now no longer drink without my stupid head and chest going into a kiniption reaction to the ice.

That is my bit on balance...speaking of balance...

This group has hopefully come to some homeostasis on the gender matter???

Oh, Jak, I might be the 'insensitive' but yet somehow passive spouse of your BOSS? So much for that sterotype. I am so glad you enjoy my posts now.

Interesting. I'm a little confused still but have to say we have some very wise people on this forum regardless of view. Anyhow I think as for genders things now are changing more. I do still feel though with emotions men still have this feeling they should not show it. I was in treatment with men and women inpatient. Rarely did you see the men cry but the women oh my. I was so proud of my friend who was a male when he actually opened up. That to me is strong showing emotion and knowing when one needs help. Gosh I didn't see my dad cry for the first time till a few years ago. I'm all about equal though in the house.When my mom left my dad he didn't even know how to microwave a tv dinner he put the whole box in. Its funny when I go on a date I will pay I don't care, though I have been taken advantage on that front as always paying which is not right. My mom thinks is so weird for the girl to pay at first. Its natural. I do notice how older men always open the door though but guys my age rarely do. Can't wait to see how things really change in the future. As for comments being made by people here. I have always felt very supported and safe but regardless on forums they are open and in life in general when ask for a opinion you may feel hurt. I think though doing it in a nice fashion as possible and to remember some people are more sensitive then others. Ok that is my 2 cents.

I chose not to be in management, because I would lose my independence and freedom as an agent. Also, management is a different animal that being a probation officer. So....I'm very comfortable in my skin.

Cyclelops:

That was the best interpretation of balance I have ever read. And I actually understood what you wrote:

I also understood that science does not exactly understand how IVIG works.

So we shall continue to exercise, eat right, (just made some blueberry muffins, God they were good). Just had one small one with a nice cup of decaf.

And we continue to pray and hope that someday, this insidious condition called Neuropathy leaves our planet.

Thank you so much for explaining everything so that my poor brain could process it. There might be hope for me yet!!! lol

Melody