I'll take that hug,and please no comment on our hugging,we are
just trying to hold each other up. And while we are doing that
may i please have a dance,because i'm sick of dancing with my
walker. I just threw the darn thing down the stairs. And honest
i don't care if we ever have KIDS,how's that for a gender bender.
And David wher the hell do you think you going,nowhere because
we like you. This has been a interesting odd post. Thanks for
the dance j,your a great dipper. I'm so confused but what's
new. Sue OH David don't care if you like them are
not. Just keep posting my sweet family.

I don't consider LEF to be the "be all and end all" but they are worth reading, and provide a framework for dealing with whatever the health issue is. The details are important, but even more helpful is the LEF approach. They provide a framework and philosophy to set up your own road map to health. Going to doctors in and of itself isn't empowering. Going to doctors within the context of your own comprehensive program of coping with your health issues is empowering. Instead of being a victim and patient, you become a person with choices who is dealing powerfully with an extreme personal challenge. Successful or not, I think that in itself is worth while and helps one deal with being seriously ill.

I never complained, and reading the heartbreaking stories on this and the previous board am glad I never complained. We are ALL lucky, no matter what. I remember Kathy Miranda from Chicago, Gentle Giant, Rocky from Oz, Sunny from Mississippi, DesertGal from Bullhead City, and many others. One thing I get from this and previous boards is inspiration from so many wrestling with their own devils, scarier than mine, and finding the strength, grace, and courage to reach out and help others.

Still, I've been sick enough, from PN and other things. With PN, I couldn't walk a block for the first 3 or so years. I had the application for a handicapped parking permit, but never submitted it. At about three years I was desperate because 1) the doctors were more destructive than helpful and were totally negative, 2) acupuncture didn't help, and 3) herbs didn't help, and 4) the pain and loss of balance and leg coordination was getting worse and I was scared to death. Following Dr. Weil's advice to continue trying things and never give up or accept a negative prognosis, I decided to try yoga.

After about six months of extremely painful yoga (I could barely stand and had no balance), I had enough balance and reflexes back to walk a painful mile or so without tripping or falling. About that time I saw another neurologist who to me that exercise could only help, to ignore the pain and do what I could to restore function.

Just before getting PN, I backpacked for many mountainous miles a day, and ran up and down mountains for fun. That's out of the question now, but still I'm happy to be able to walk and work. Nothing was or is easy for me or anybody else, but what is the alternative to striving toward health and vitality?

I love hugs (human and animal), but the "token" hugs just don't give that deep and profound visceral heartwarming feeling. In a way, the last sentence of the previous paragraph is my way of hugging you. As they say, whatever rings your bell.

I have read this thread twice and have no idea what's going on!!

I reckon I'll hug me self!

I agree Aussie, i am a little confused here. Can I share that hug?

Interesting that your husband is in the same line of work as I am. Also, as a point of interest. I have always enjoyed the internet for the ability to engage in thoughtful conversation. Many years ago, I was a regular in a chat room. It really was fabulous. I don't know how to explain it, other than it began to truly feel like family. I grew up in a home where communication was not a big part of my life. As a parent, I made a point of changing that with my children. However, to engage in conversation with intelligent people with diverse knowledge and experiences in life....I find very stimulating. It really doesn't matter that this is a PN group. H*ll, even if I didn't have my crappy feet, I think I'd still enjoy reading the posts and occasionally putting my two cents into the mix.

I have a question about balance. I read on these boards that many of you have balance issues associated with your neuropathies. And when I went to the Neuropathy Support Group meeting in NYC last month (next one is on June 21 at the CBS building), well many of the people there (who are on IVIG) say that they would never get out of the wheelchair if they didn't use the IVIG.

So does this apply to diabetic neuropathy too?? I mean, I had the burning, the buzzing and it's annoying as hell and when the weather doesn't cooperate, I go nuts for some time, but it does go away. My feet sometimes feel like doughy bread (for want of a better description). But I take my methyl b-12 and will continue to do so. But does this mean and further down the road, I will be having balance problems??

I don't have that now, and hopefully I won't in the future. But is it a common factor in Diabetic Neuropathy to have balance problems down the road? Or only people with CIDP and other kinds of neuropathies?

Thanks.

Melody

Anyone who has numb feet will have balance problems, because you then need to use your eyes to balance, you have no sense of where your feet are, you are not getting that feedback. So the cause wouldnt matter, its wether your feet are numb or not. I think some autonomic neuropathy may give you problems with balance also.

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.