Sounds like you two have hit the jackpot, so to speak , this is certainly great news, who would of ever thought of that, i am happy for you both, good stuff. and i hope it helps others too.
all the best
Brian

--I think your analysis is right on the money.

Many of us--I would say most of us--who have neuropathy, from whatever cause (diabetic, toxic, autoimmune, whatever) seem to be far more prone to additional neuropathic effects from compressive forces that might not otherwise bother a "normal" person. I've written before how diabetics and people with vasculitic conditions are much more prone to carpal/tarsal tunnel effects than others; this "double crush" phenomenon works by adding pressure to already compromised nerve fibers, exacerbating already existent symptoms or producing them where there were not before. I suspect my radiculopathy symptoms are increased due to the already existent damage to my nerves, and so on.

In Alan's case, he certainly has other things going on, and his neuropathy has an immune component on some level, but taking away the additional forces of compression on his nerves may just reduce the pressure enough to provide good symptom control--and hopefully with the IVIg the other processes at work can be controlled, too.

You yourself have sort of noticed this, in a way--that lovely instrument that got your feet buzzing that time likely added compressive/constricitive forces to your neuropathic processes and upped your symptoms. You may find as time goes on that shoes that allow your feet "de-compression" room make a difference as to how often and severely you feel symptoms. Shoes designed for diabetics are supposed to take this into account, of course.

You might go the cotton ball--or felt/fleece covering--route--imagine if you both had cotton balls between your toes at a doctor's appointment. (A good conversation starter, at the least.)

Hi Dakota, Hi Cathie:

I only wish his psoriasis would get a break but I did try something new and it works really well on some of his spots.

I had gone into a medical supply store near my house (we have about 10 of them in a 20 block radius. I have no idea why there are so many medical supply stores but there are. And they sell the medical shoes, the braces, the walkers, etc.

So I went in to get a better deal on bandage rolls. Because every morning, after we do the cotton ball thing, and I do the ulcer thing I have to wrap up his whole foot (like the doctor showed me). This uses almost one complete roll.

Now you can purchase these rolls for either 89 cents or 99 cents (in the dollar stores). Melody had the bright idea to go to the Medical Supply store where maybe I could buy a case of these rolls.

Oh yeah, bright idea. Do you know how much a case of rolls are?? 12 rolls in a box. $18.00. Now why on earth would I buy a box of 12 rolls for $18.00 when I can go to the nearest dollar store (or even my local rite aid and buy a bandage roll (all sealed and sterile ) for either 89 or 99 cents??(doctor says, this part of the bandaging process doesn't need the sterility, only what goes over the ulcer, so I use 4 x 4 sterile gauze pads for that part. Then the bandage roll goes over.

So the medical supply lady said "you will get a better deal in the drug store for the bandage roll". Well, she got that right!!!

So as I was looking in the store, I gaze upon a great big jar of ointment. Now I had been using A&D ointment on his dry skin. Worked pretty good. I used the generic brand. So this big jar is 16 oz and it costs $6.00. And it's not just Vitamin A and Vitamin D. It's Vitamin A and D + E.
Here's a pic of the jar.



Now I have no idea if the Vitamin E makes such a big difference, but I can tell you that Alan used to have psoriasis between his eyebrows, in addition to behind his ears, and on his calf, and (well, let's just say various parts of his body). And the ivig sometimes makes it flare up.

So I had been using regular A&D and the skin would soften, but THIS STUFF, well, his forehead, and between his eyes are as clear as a baby's behind. And the stuff on his calves and on the side of his leg (he had a big bad one there), well whatever is in this ointment, well, his skin is very different.

And right now, he's laughing his head off in the living room watching something on tv, so you know his pain levels are zero to 1 right now, so the cotton ball thing is still in effect.

So between the Vitamin A, D & E ointment and the cotton balls, well, we might just go out on New Years Eve. That would be a first in 20 years.

One can only hope. lol

Melody,
You have been so inventive. Did you know that you can buy toe separators from this place: http://www.supportplus.com/product_d...cfm?STYLE=R214 They might work well and they could be washed. You said you didn't need sterile anywhere except directly over the ulcer.

I'm wondering if the reduction of friction is what eases Alan's neuropathy.

Oh ..forgot, can you tell me the name of that ointment you got for Alan?

Billye

First of all BILLYE:::

Thank you, thank you, thank you.

I think I will have to put two of those things between each toe, so I would buy 3 packages of these things. Cheap enough. And it beats the heck out of cotton balls because they would stay where they are supposed to stay. I put this site in my favorite place and later, when Alan puts his boot back on, he'll mosey on over to the computer and I shall show him these. He will be amazed.

Now for the name of the ointment? That's a good question.

The only thing it says on the front of the label is H H, (look at the upper right in the pic).
There is no other indicator of what company, no p.o box, no phone number,
It does have some kind of serial number on the label.
NDC 52471-0100-16

And on the bottom of the label (which I had thought were some kind of decorative hierogliphics, it actually are the two letters H H next to each other.

But just to make sure, when I again go on 20th Avenue (right now, it's pouring outside), this store is only a few blocks from my house, I shall go in and get the actual company name, then I'll post here.

And Glenn.

I don't need cotton balls, or any other kind of balls. lol

Ever since I did the methyl b-12, I have no problems. Very little burning from time to time.

I do wear crocks, sandals that don't compress my feet (I took at look at was in my closet that I used to wear and I went "oh my god, I could never put my toes into that little toe box. (You know the kind, the dainty shoes where women squeeze their feet into?)

Well, no more of that for me. I just bought new white slides, (that cover the front, give me support, but leave my toes exposed, so on a really hot day, I can go shopping (no major walking, I have diabetic shoes for that).

And while I hate the look of the diabetic shoes, I know that they won't compress my feet so I'll wear them in the fall and winter. No sandals then. And I heard they are coming out with Winter fur lined crocks CAN'T WAIT TO LOOK AT THOSE THINGS!!! lol

So, for me the Methyl B-12, was a god send. Not for Alan, he gave up too fast. He wanted instantaneous relief. Doesn't happen that way usually.

Five minutes ago, he was sitting in the chair (wearing the cotton balls, the sock, and the shoe boot and he goes, "my neuropathy is killing me". I said "the boot is probably too tight in the toe area".

I took off the boot, took off the sock, got the toe flexor things. YOU HAVE NO IDEA HOW LONG IT TOOK ME TO GET THESE TOE FLEXOR THINGS ON HIS FEET, his toes are so screwed up, I had to jam this thing between his toes, they are so squished together. My toes look nothing like his toes.

So I get the toe flexor thing on his feet and I said "now sit there and squeeze. That's exactly what he is doing. He says "oh, that's better".

Now how do I get doctors to pay attention to this?? Do you really think they are going to take our word for this??

Melody