Thank you for all the nice comments!

We have two threads in the Subforum:
http://neurotalk.psychcentral.com/thread121606.html

http://neurotalk.psychcentral.com/thread147771.html

And this one in the stickies already:
http://neurotalk.psychcentral.com/thread177.html

This one has a graph with test results linked to Wiki, and an explanation of what lab ranges mean:
http://neurotalk.psychcentral.com/sh...hlight=testing

Conversation however, tends to float all over the forum however.
If you search glenntaj in members list, you can see his last 500 posts and select any conversation that pertains to you.

You can also search a test name in the search function on the first PN page (the index page).
One has to have 4 letters in the search minimum. This will bring up everything with that subject from the last 4+ yrs.

People come and go here often and we are one of the busiest forums on NeuroTalk. It is really difficult to put everything in one place. The SubForum was made to help with this, at least most of the information is there now. And it is not complete yet!

Speaking of toxins, check out p. 233 from Dr. Teitelbaum's book From Fatigued to Fantastic. (Note the ref to Lyme's wrt reabsorption.)

Hello MrsD:

Just wanted to give a quick update on day 3 of taking the Benfotiamine (300 MG/day), Methylcobalamin (1MG/day) and Alpha Lipoic/L Carnitiine (the only form I have at the present).

Well, as in the past, by the end of day 2 experiencing fierce tingling over MUCH of my soles, even without much provocation or contact, and keep in mind I usually get a pretty good level of relief eventually AFTER taking shoes/socks off, removing any weight/contact. Palms of hands also tingling severely...and they're often more than tolerable.

Should I possibly stop all supplements and then add-in 1 at a time? If so, what might might be a telling order or addition? The ODD thing about this is when I took the B12 shots daily for a week 2 months ago, I didn't really sense any increased tingling, possibly minor improvement. IF the B12 is the culprit, and it has been in the past in solitude, why just the oral version?

Not so sure it seemed necessary, but I did have a draw for a comphrehensive thyroid panel/male hormonal a few days ago - this relates not just to PN issues, but also some others things I have NEVER had tested before, plus thyroid 'can' relate to PN. By the way, certain branches of my family tree are heavily affected by thyroid issues, so perhaps a clue?

Any thoughts/references to the following? Wanted to illustrate another scencario I experience and have noticed regarding the neuro pain symptoms. Upon waking but still in bend, soles will start their tingling/burning sensations within anywhere between 5 & 15 minutes 'after' I gain 'heightened' consciousness, yet sometime AFTER I wake for when I do when, I have NO/ZERO pain. Bear in mind that this is with no movement & me retaining my 'side-sleeping' position with both soles not touching anything. It's almost as as if my brain or some part of the nervous system is sending a 'false alarm' as I wake up? While maintaining this position, tingling usually starts in heels and then works its way up to the ball of both feet. This happens no matter what I'm thinking about, how calm, relaxed, rested, or tired...just very confusing :(

Can anyone share experiences with different SFN skin punch labs? I'd consider another test to guage where I was back in 2010-which was neg for SFN. With a roughly 90% accurracy rate, the odds seem in the test's favor for my old neg reading:) over any hunch I may have. But another go round would be even more confirmative to my mind, in the absence of a source/cause?

Does anyone know of a way to test the hypothalamus? This just relates to the possible 'neuro-fibro' dx that's been suggested in my case as many think fibro is some sort of malfunction of the hypothalamus or central pain processing system(s)?

Can any part of the sympathetic nerve chain (post spinal cord) cause neuro-hypersensitivity WITHOUT the swelling/skin changes as seen in CRPS/RSD? I've never had any sort of nerve block, would a lumbar sympathetic block possibly be diagnostic for where the pain originates?

Want to thank NeuroLogic for his/her excellent link to the Teitelbaum article on neurotoxins. With my negligible past Lyme/and/or/toxic exposure, makes me wonder. By the way, I have another Teitelbaum book about chronic pain, good intro work and available for free from google books!

At the end of the day, I really just seek diminished symptoms, for which I rarely enjoy :( and make life so difficult.

Been seeking relief for over 5 years...will do whatever I must for the next 5 to be more tolerable than the last. Throughout all the nerve pain, I still work, albeit at a diminished rate which is just as well since I cannot take much comfort in sitting/lying down etc.

Kindest Regards,

JB

I have 2 thoughts.... when nerves wake up they do tingle.
That was my experience when I went on thyroid medication...
That lasted a YEAR... from numbness to tingling.

Also you can just do one at a time. B12, for 2 weeks, add in Benfotiamine, etc. at 2 week intervals.

The alpha lipoic in your mixture would be low dose and not absorbed well, and not likely to be working much.

As far as sleeping goes.... I have stretches at night when my feet feel normal. As we wake up the brain wakes up too, and the pain loop that registers pain for us is quite long/large and goes down to the brain stem and back up again into the brain.
It takes some time and activity for it all to work, I think.

Tingling is not a good diagnostic sign to hang your results on.
Tingling comes and goes, may be waking up or on the way to numbness....it is hard to pin down.

Now numbness I think is serious. And burning pain, I think is awful. I don't get the burning much anymore, but really I'd take tingling anyday.

The amount of B12 you absorb orally is very small. It is a stretch to think it would work this quickly, given all the places it needs to go including storage in the liver.

So just do the B12 for 2 weeks. When you then add in the Benfotiamine, do only 150mg daily for two more weeks.

See what happens.
I never get any signs from my vitamins. I do however get jittery/jived up on too much R-lipoic. That is a psychological thing, not a pain thing.

Last year I had freezing cold hands and feet and pain when they warmed up. This year nothing of the sort. And I guess that is because of the newer supplements I am using.
I switched to the stabilized R-lipoic, started 300mg of theanine for anxiety, and still use 150mg of Benfotiamine at bedtime.

Try not to focus on the pain signals.... I think focusing on them makes them seem worse. You can dissociate from them, using auto relaxation, or thinking about something completely different. Also when you get up you are fasting, and need to eat.
I bet things change radically after you have breakfast? That is when cortisol sweeps in to moderate physical stress.

Good Evening MrsD :)

Thanks for the reply.

I actually NEVER have numbness...for the first several years that these sensations became troublesome - I always referred to as burning, and still feel that was accurate. I still get plenty of burning, but what I feel in the sole (as when waking up from sleep) is very much tingling, I can tell the difference pretty clearly.

Good advice on the single vit/med regimen. I'll be completely honest, that I also 'believe' in the placebo effect, so perhaps 'some' of what I experienced from the supplements is that?

I will also say that I walked more yesterday than I usually do in a pair of comfortable running shoes, which I will usually not wear (sandals are my norm, looser fitting). WHen I started my walk and for 20 minutes into it, I was almost normal in sensation with each step, as usual, burning/tingling comes from 'post use' seems accumalative. I just do NOT have a 'normal' tolerance for walking, standing - is this a common complaint in these parts?

How long ago did the PN in your feet present? Are the soles as well as top affected? Nature/level of neuro pain?

I follow you on your comments about the brain/pain loop. What I wonder about, is the common scenario of people that 'wake up' in pain, which I do believe is true for many. Yes, I have near-chronic pain throughout the waking day upon 'normal' contact/activity, but I often do NOT wake up in any/much neuro pain! What would be the distinction between your/my scenario and the 'constant' chronic pain experience of others?

Bravo on the 'standardized' R Lipoic Acid - seems this has really helped you out - good news and hope others are experiencing the same? Not sure IF I've ever taken 'standardized' form? I do know I took a short course (maybe 2 weeks) of R Lipoic almost 4 years ago, is all 'r' standardized?

Words never wiser about NOT focussing on the pain signals - it's the ONLY reason I am still pushing on 5 years later, trying to live better than the day before. I spent all of '07 with NO rx med and I slept only about 15 hours per week from pain against the bedsheets (Ok that was a time when I 'awoke' in pain, almost every night!) Some of my BEST times are when I'm in total concentration with my work, a hobby, my cats etc. Even love my yardwork for a short 'while'...just need to be able to stand/sit/lie longer, not forever or hours, just longer, to do what more of what I must and want to do :)

MrsD, I again thank you - you're touching more lives with good advice and sound logic than many MDs I've seen.

Take Care,

JB :grouphug:

PS: Anyone who loves kitties (any any animals) is also my kind of person! I have 2 here with me now, not the most affectionate I've owned, but they still provide hope, laughs and love, even at the darkest of times >^^<

No, not all R-lipoic is stablized.

This thread explains it all. The stabilized one is highly absorbed ...higher than any other form of it. I was using Source Naturals, R-lipoic which I discovered was not stabilized..hence it wasn't really working for me. After switching to Doctor's Best, that is when I started to improve more. The HbA1C test proved that one!

http://neurotalk.psychcentral.com/sh...ght=stabilized

My foot pain is mostly the worst when I first go to bed. Then it seems to wane until morning. I have used Biofreeze when the burning was awful at times. Back before I discovered potatoes as a trigger for it, as well as MSG... I was having burning very often. Now not so much. I have arthritis also and that left foot surgical scar which sometimes swells up too. So 3 major pain generators.

I am testing out N-A-G 750mg from Jarrow, in the hopes it will help the arthritis some. There is a thread about this in the Subforum above. But it just came this week, and I've only used it 2 days so far. After a month I should know more ... hoping to get the sesamoid bones and tendons around them quieted down some.

Our new kitten Houdini is so loveable. He greets you by tapping on your hands or legs with his little white paws...so gently. He also does that to Weezie I've noticed. I have a new
portrait of him I just put up in my profile album. He is so cute!
He is the most social and loving kitten we have ever had. He plays very creatively and I love doing his games during the day. He was an 100% outdoor feral--- and is not "feral" at all (his littermates were wild though). I trained him to use the litter box in 2 days! And he has adapted to our stimulating home with ease! He has charmed all the Vet techs at our Vet too... ooooouuu and ahhhhh...everytime we go in.
We named him Houdini because he escaped when we brought him home, and we couldn't find him. (his tuxedo fur looks like a magician too) He likes the name and came right away to it when I tried him on it! So he remains Houdini. ;)

Hi MrsD:

Thanks for the R Lipoic details and glad you've benefitted :) So this supplement also benefits nerve pain for those with normal range/stable glucose too?

Sounds like you have a pretty good understanding of your pain triggers for the feet - good place to be other than totally pain-free. Hopefully the N-A-G will calm your arthritic side of things?

Houdini sounds like a charmer! You most certainly have a 'gift' with cats if you've adapted a ferral cat to your home, in a few days time no less :cool: I took one in back in May (I drove hundreds of miles to collect her) for I intended to be my new pet. Several months without much improvement. She's now back at her no-kill shelter, but I still wish I had the skills to have made it work? A cat named Weezie? How ironic, I've relatives with a cat name Weezer, and he often gets called 'Weezie' as well - he's a sweetheart, Ragdoll breed. My 2 cats are Exotic Shorthairs - lazy person's Persian - I could not be happier to have them, so different than any I've owned before.

I'll check out your latest photos - had seen some shortly after registering.

Take Care,

JB

oh, heheheh.... Weezie is named for two reasons.
1) I was reading a book at the time with a character Weezy, short for Louise BTW....

2) when we got her home last January, she was the only kitten left in her litter, because she was very timid. Tippy had suddenly died, not long after Sheba (24) passed in Oct 2010... and I was so upset, and there were NO kittens anywhere....etc etc. Well, Weez never meows... when we brought her home, she went ...
Weeeeeeoooooo instead. If I asked to play she'd squeal and go wheeeeee... She still does this, but a bit less. It took a week to name her. So in effect she named herself. She only weighed one pound and a half, and was the second smallest runt in that litter.
I wanted to call her Teeny... but hubby said NOPE... "think ahead" And now a year later she is ginormously huge... She is all black and shiny with huge eyes...just like a Bombay breed. She is quite spectacular now. She is semi feral, with a outside daddy and inside kitty Mom. She is less demonstrative than Houdini, but she seems very devoted, and comes when called, etc. She is more independent now, but when little and younger was very attached to me. Now she has Houdini, and both seem happy and enjoy each other! Took him 2 weeks to make friends.

We have discovered a new dry food....My son recommended it.
Weez has lost a bit of her "fundamental back end" on it too.
It is Blue Buffalo Wilderness for cats... grain free. The formula is reflective of new research coming out which you can now find on the net from Vet schools. Cats develop intestinal inflammation from grains and carbs in general they can't digest them. This formula uses sweet potatoes instead and not in high amounts. It is 40% or so protein.

All 3 of ours, including the mysterious ill Oreo, who is outliving the cancer diagnosis, (which we now wonder if it is legitimate), eat this new kibble heartily. It is not the main food, as they get chicken, shrimp, turkey on occasion, and canned food too.

To raise a cat to be the best they can be, they have to have a kernel of tameness. I won't adopt a wild cat. I want a pet who can learn and participate in our home, play, and manage our vacation home on the island. So they have to enjoy being held, not be hissy spitty, over little things, things like that. Weez was very very timid, and no one wanted her. But timid is okay, may not get into scrapes outside or upNorth, so I don't mind timid.
She took endless attention and rewarding for doing a "good job" at anything. She does fetch but doesn't jump much. Houdini jumps runs, climbs, and fetchs a little, but is the exact opposite.
Weez does like to hunt but we have not seen her kill anything, and does not eat the prey either (unlike Oreo is known to do).

They all have very different personalities, and some of that core behavior appears inherited IMO. So don't feel like a failure with your last cat. It was probably a core thing going on there.
Cats love to be paid attention to...even if you don't realize it.
The more you put into them, the more you get back that might surprise you. I don't know why Houdini is so different from his litter mates... they all lived outside in a dog house with straw on the owners back deck. Each time I get a new cat (ours tend to live a LONG time--so it is not often), I get the feeling, it was predestined in some way. A woman preceded me at Houdini's house, and she took a cute female and disdained him. And really he was the "special one"...so it seemed we were destined too. Each situation was involved with pain, or grief, or changing one's mind, or whatever. But in the end, that cat always turned out "special". ;)

Good Morning MrsD:

Thanks for the kitty details - I'd say you have some very lucky cats!

The trio of Weezie, Houdini & Oreo sound so well adjusted and complimentary to each other. Good thing you opted out of the 'Teeny' name - they never get smaller ;)

So true, they all have distinct personailities, traits, habits. I've found that pure-breds invariably share a blueprint with their breed - sure there must be exceptions, but among the pures I've had multiple times, one would almost think they're cloned - I suppose with mixes, you get a little of them all :)

Excellent info about the low or no grain foods - I believe there is some validity to this. We've had many cats live seemingly long and healthy lives (several to about age 17) on 'regular' foods, but not a bad idea to look in new directions. We've never had a cat live to 24, that is absolutely impressive!

I still think about the feral cat I could not help :( But I think in reality, she was so disconnected from humans for so long, that she probably has the die set pretty strongly. I tried for almost 3 months with her, no improvement. She spent most of 'my' waking hours under my bed or furniture. Even put boxsprings on the floor etc and she always found a place to hide. I know such cats seek a high or low spot, just instinct I believe. Strange thing is, when I went to sleep, I'd hear her come 'out' into the house and she'd spent most of the night doing normal cat things. I think the fundamental trait of a true feral cat is they're fine with other cats, just not people?

I love the two I've taken on sooooo much :) I adopted them in early August, both are almost the same at 3 years. It's a long story, but I obtained them from a woman who bought them both from a breeder and this owner could no longer keep them because of allergies in her teenage children. I can assure you, I give them a pretty good life since I work at home they're like my own kids!

Hope all this 'cat talk doesn't run everyone away - I'll stay on subject from here forward ;)

Take Care, JB

I love reading others' cat experiences.

There is a guy on Animal Planet that rehabilitates cats for people. There is one episode where he really fixes, a fraidy cat who is aggressive even! That one took time, but he did a good job. There is also an author who has written some books with stories on cat weirdness..Twisted Whiskers is one.
http://www.amazon.com/Twisted-Whiske.../dp/0895947102
An interesting read, and she has others now.

http://animal.discovery.com/tv/my-cat-from-hell/
I've watched a few of these. I have mixed feelings about him.

I do think that cats more than dogs have risky gestation.
Cats need taurine (dogs make their own). So if the mother is lacking enough taurine for the kittens, they die at birth, or are even resorbed as fetuses! Some can be born with neuro problems, and Weez for example was the 2nd runt...and I do see she is not as "sharp" as Houdini.And I have always thought Weez couldn't see too well. She still rarely looks out windows and is full grown. Houdini's home, while outside, had great food and a caring human to provide for the pregnant mom cat. All of her cats (and she had MANY and they were splendid with wonderful fur and were very healthy looking.) So if a kitten is born and manages to survive but is taurine deficient? Well, it just won't be 100% normal IMO. Cats do tend to let fear overwhelm them, and when that happens, we have to step in and dilute that with training. But if the nervous system is faulty and broken, training is not going to be very successful IMO.
I praise all the time, when they are doing what I want. And I give a treat, when they are extra good. (like taking medicine, coming home from Vet, traveling in the car on vacation, etc.).
I really praised Weezie all the time when Houdini came when she was quiet and just watching him. She got the message...and is careful with him still. I am very careful when I pick a kitten. I choose temperament over appearance. Oreo was very depressed when we adopted her, for about 2 weeks. And all I heard from hubby--- "You picked a DUD, this time" !
Well, she came around and turned out to be the smartest cat ever, and loves HIM particularly and watching them together is amazing...esp outside. Even people walking by comment on them! When he is outside, she is with him always! ;)