Next Tests? Any Advice?
 

Hello:

New to the forum, but NOT new to neuropathic type pain!

My short background: Male, 42, developed burning/tingling sensation in left sole in early 2005 (when 36)...by mid 2005 in right sole and occassionally outer front calves. Was able to ignore until late 2006 where I had the same sensations in palms and outer regions of both arms. By late 2008 same sensations in upper back and by mid-2009 on the rear of both quadriceps.

At this point I sought medical help/tests/pain relief.

Since then, most tests normal. Basically normal MRIs from Brain to Lumbar. Negative repeatedly for diabetes, hiv, normal b12, normal ANA, sed rate and thyroid and in 2010 a totally negative skin-punch biopsy for small fiber neuropathy - this seems to be very telling, especially since I was repeatedly told I have 'peripheral neuropathy' and this lab claims an - 88% + accuracy rating.

Only tests to NOT be normal are: low D3 and very elevated EBV (chronic infection) in 2010 and equivocal Lyme test results in 2008.

Much of the burning sensations (as outlined above) got MUCH more widespread AFTER I stopped about 2 months of antibiotic for Lyme treatment in 2008 - NO I did NOT take Flagyl as I know it can cause neuropathy.

My pain is strictly neuropathic (burning/buzzing/tingling/tingling). Seems to come on upon sustained contact. NOT instant contact like in RSD. I have NO muscle or joint pain, no swelling. Just a hypersensitivity to 'prolonged' contact or pressure which present anywhere from a few minutes or less of contact.

Heat makes the burning skin worse, cool seems to help a little, but not too cold, which in turn feels like a freezer burn.

I've seen several neurologists - they have no idea? Just want to give me gabapentin, which I've taken for almost 4 years with very little relief at 2400 MG/day. I tried increasing, no greater benefit.

My question? What would be prudent tests that may have been overlooked?

I'm curious IF hormones could play into any of this? I DO have some symptoms of hypothyroid, despite a normal result back in 2009.

Any vitamins testing to consider? I was very low in D3 (21 from a range of 30-90). Would it make sense to test for B6? Magnesium?

I ask about magnesium for I will twitch violently whenever I've attempted to take a magnesium supplement - even well BEFORE I developed neuropathic pain.

Like others here, these symptoms are very difficult to live with. The gabapentin has not helped (actually made things worse in that I've slowly gained weight, despite efforts to exercise etc).

I believe there's a cause for everything, and I have to really wonder, do I really have 'idiopathic pn' when compared to the totally normal skin punch?

If it's not PN? And it's not MS or another CNS induced pain? Could it be Vitamins, thyroid, male hormones etc etc?

Just looking for a direction to go at this point of the search?

A kind thanks in advance,

JB

Hello Again:

Didn't want to reply to my own thread, but couldn't find the 'edit' option?

Just wanted to add that I do NOT experience numbness! Just pain :(

Also wanted to ask IF adrenal function could be a cause or factor in neuropathic pain?

Before I had 'chronic' nerve pain from 2005-onward, whenever in times of stress circa 2003-2004, my feet, lower legs would tingle and then improve.

Never had adrenal/cortisol testing, but again, would this be helpful at all?

Thinking this might have been a problem of mine well BEFORE the nerve pain started since I have not slept well in over 10 years...

Thanks again,

JB

Well, first off... "normal" doesn't mean much today with some tests IMO.

Please get your B12 actual numbers, because lab ranges in US are very low. At the low end of "normal" people can have considerable neurological damage.

Also "normal" for diabetes is not very accurate either. People who are pre-diabetic have been shown to have PN beginning in studies. So fasting blood sugars should be logged and followed by YOU to show trends. Also get your number result for HbA1C...and follow that yourself.

Please read this:
http://neurotalk.psychcentral.com/post810705-1.html

If your doctor gave you an RX for the D? It is D2 and not active. You should know that it is practically useless...but of course doctors don't know that, as they don't follow the research. You will want to use D3, in a dose 1000IU per every 10 units you need to raise. Your target today should be 50, in US units. So you need 3000IU daily of D3.
D3 is over the counter.

There are supplements that may help you. And topically a product like Biofreeze (I think this one is the best) applied to the feet may stop the burning for a few hours.

Magnesium is one to begin with.
Here is my mag thread:
http://neurotalk.psychcentral.com/thread1138.html

Aim for 1/2 the RDA as in the thread, and choose a supplement that is NOT OXIDE form.

R-lipoic acid (stabilized) can be very useful for people with impaired glucose tolerance, or other causes of PN.
Depending on which antibiotic you used, and for how long, I'd have to know the name and dose for recommendations there.
If you have hidden Candida in the GI tract from antibiotics you would need aggressive probiotic replacements. I think Kefir, is the best natural one, as it has 12 organisms in it:
http://www.lifeway.net/
Typical yogurts have only 3-6 types and the kefir is far more effective therefore.

When Candida is established, its metabolism releases aldehydes into your body which are difficult to clear. Thiamine is the cofactor for this, and taking some may help. Its newer form Benfotiamine is longer acting and more efficient. Starting at least at 300mg a day, for 2-3months should show some improvement if it is going to happen. This supplement is also good for targeting diabetic neuropathies. Most of us use Doctor's Best Benfotiamine. Can be found along with R-lipoic by Doctor's Best also at iherb.com and Amazon.

If you have used Cipro or Levaquin or Avelox in the past during all this progression, there may not be a quick solution to your PN. Fixing the nerve damage that some people get with the fluoroquinolones is tricky and may be unproductive.

You may want to repeat the ANA at a later date, as normals may show up in some testing, where they later become elevated.

Antibiotics kill off bacteria. Our mitochondria in our cells, are decendents of bacteria, and hence some antibiotics damage them. Studies are ongoing now about this, specifically in the Autism community where they are finding that in some people damage can come to mitochondria in this way, causing neurological damage. I have seen even simple antibiotics like Amoxacillin implicated. But this is still in the investigative stage.

You will want to avoid vaccines, also, as they can cause damage.
That is a whole other topic by itself!

So consider modest use of some supplements, and get those B12 results, and see if you can heal up.

Exposure to dry cleaning solvents, toxins, paint strippers, arsenic, pesticides (gardening), or other toxin should be looked for and avoided. If you take Statins for cholesterol, consider discussing stopping those with your doctor, to see if that helps. Statins, prevent remyelination (repair) of nerve insulation.

Thank you kindly MrsD for your knowledgeable and extensive reply!

I do have details on much of what you addressed. Will try to respond as succinctly as possible, but will still need to have some detail...

B12 levels? A little over 500 on last test...so within range. Subsequently I took a short course of methylcobalamin shots which 'may' have helped when taking 1000 MG daily for about a week. MD didn't want to prescribe more than once per month after that, following published guidelines I suppose? Currently not taking any. NOTE: When I've atttemped pill/sub-lingual form in the past, I've always had to stop within days since I will tingle all over badly which did NOT happen with the injected methylcobolamin!

Never tested mag, but may do so very soon. Cannot overstress, when I take it, within days, widespread twitching, which really doesn't bother me other than eyelids. I've taken gabapentin for almost 4 years and have just read that it CAN deplete magnesium :confused: Have you heard this? If so, this could be an issue? Have made note of the forms suggested, thanks :)

I have taken benfotiamine at times, again did not not sustain the therapy. Again, I'll probably test this soon as well. Do hope the serum/whole blood test for these vitamins/minerals are generally accurate?

I tested D3 in 2010 on my own initiative. When I supplemented with D3, it seemed to make symptoms worse. Also experienced greater insomnia, which also makes all of the sensory problems heighten. I may have this tested again in my new workup. Very frustrating that I'm not able to tolerate these supplements that are beneficial for my symptoms :( Even though I may just have to try and push through to get them into my system? What do you suggest with the apparent lack of tolerance ? Smaller doses? I am somewhat embarrassed I've not faithfully taken the supplements as so many others here seem to adhere to :confused:

Good points about 'normal' glucose levels. I've only ever had 'fasting' levels tested, always between 82 and 97. I do have relatives with Type 2D but I show NO other symptoms. But you're right, I've read of PN being a 'presenting' symptom. A close family member with T2D for about 20 years is just finally having 'minor' PN symptoms in their feet - so my presentation is far different than theirs! Perhaps the hBA1c is warranted?

Thankfully I did NOT take any of the antibiotics you listed. I can remember taking IV Rocephin, biaxin, doxycycline. Doxy also seemed to intensify the burning tingling while ON it. Again, the burning of back skin/rear legs became chronic AFTER the antibiotics - maybe related or coincidental, I have no idea?

No recent vaccines.

I have been exposed to some questionable chemicals (plastic/acrylic gasses) sporadically in my work and even less occassionally while gardening - this is always something in the back of my mind. Problem is, exposure was 5-12 years ago, what would I do now to assess damage/dysfunction beyond what I've tested? Mentioned this to neuros, they have no suggestions. Any ideas? By the way, this would NEVER be worker's comp issue since I am self-employed. So no blaming anyone, just want to help my symptoms :)

How accurrate are these skin-punch biopsies in surveying SFN? Based on my strictly sensory symptoms, the doctors and myself really thought this was my diagnosis until the negative test. Would a re-test be suggested? By the way, the sample was taken from the back of my right calf (as directed by the instructions), yet this is an area that rarely burns? The lab suggested one of three test sites, have to wonder if another one of their suggested test sites would make sense? Is a sample EVER taken from the sole?

I need to give biofreeze a try, even though I might have used it back in '07-'08? I've tried several topicals including compounded meds to no avail. Yes, cool surfaces tend to calm down the tingling, so much so I keep a tile under my desk for relief on my bare feet, run the ac in my car at floor level. Shoes are excruciating JUST on my soles, so I try to go barefoot in my house as much as possible...but this presents a problem in that I don't enjoy the 'cushion' effect of shoes while having to stand still or walk.

Standing still 'after' walking is one of the most painful times for my soles. When I move, the tingling can be much less noticeable. Also soles on floor while sitting, driving etc are not happy :(

Never taken a statin, in fact no rx meds for many years before the neuro symptoms started.

I will add that the nerve pain gradually started after about 2 years of extreme fatigue AFTER I lost about 65 lbs in 2002, intentiontial weight loss via reduced intake/herbal diet supplements. After the weight loss, I started gaining it back, was exhausted much of the time and had a 9 month long respiratory ailment, which was severe at times, so I did not seek any help for it. All of the above between 2003-2004. By spring 2005, first somewhat regular neuropathic symptoms. Saw first MD for burning sensations in Jan 2007 despite not seeing a doctor for at least 15 years prior to that.

I again thank you MrsD for the time you give me and so many others. I do have 'ok' times for part of most days, but this has never gotten easier in the 5 + years of living with it. I work (at home) which does distract to some degree as do some interests, pets etc. Many days the ONLY thing really troublesome are my soles if I do anything that others would consider normal activities. I suppose this is a common scenario here. Sitting becomes painful too, but can be avoided if not in any position of constant pressure for too long?

Will seek some vit/min blood work and check out the biofreeze. Also interested in different rx med combos, but that's for another thread I supose.

Please take care,

JB :grouphug:

Sudden weight loss implies low fat diet. If you do not provide
essential fatty acids daily (good fats) the nerves cannot maintain themselves. Nerves are mostly fat in composition.
There is even a medical term for this: "slimmer's paralysis".

The nutrients specifically to repair myelin are B12, folate, B6 and
fish oil.

There is an RX version of activated B's called Metanx. If you decide to use it, take it on an empty stomach.
There are people who require the active forms because of genetic failures of conversion in the body.

When nerves wake up from being numb, they often tingle. Also when cold and then warm up, they tingle then too. So keeping a log maybe helpful for you. And using tingling as a guide is not always accurate. Keeping your feet cold like you are will result in tingling later, as the blood flow improves again. It can be a pattern of your circulation and not a symptom per se.

Blood work for serum levels of B6 and magnesium are only valuable when they show very low levels. Otherwise, the ranges are not reflective of much. Better tests involve intracellular testing, so consider those. Spectracell labs is one type.

Sometimes people with progressive problems and strange reactions to supplements may have gluten intolerance...meaning the gluten peptide has escaped into your system, and is causing various autoimmune/inflammatory problems. Here is a link to that:
http://neurotalk.psychcentral.com/thread1872.html

Fixing the gluten problem by going gluten free, has helped some people who have come here over the years with PN.
Gluten intolerance may be Celiac (genetic testing) or acquired later in life due to leaky gut, without the genetic markers.

I'd start on the Kefir ASAP. YOu might find a considerable improvement.

500 is not a sterling result on B12... as Dr. Snow, in his research found people with neurological damage at those levels:
this is a link to his paper on it:
http://neurotalk.psychcentral.com/post698522-70.html

You could take 1000mcg (1mg) daily orally, on an empty stomach and see if you can get that level up closer to 1000.
The higher the level, the more successful the B12 can travel into the spinal cord and brain. You will want methylcobalamin oral.

You can test yourself....either borrow relatives glucometers, or get one yourself. You might be very surprised at what you find.
One Touch ultra mini is free---but you have to buy the strips or get a doctor to RX them to you, for insurance. This probably would put you on "diabetic" diagnosis. This can help if you ever need diabetic support, special shoes etc. But it also labels you
for pre-existing conditions. There are so many people with insulin resistance....who don't know it. Another test is a fasting INSULIN...and if this is elevated, that points to impaired glucose tolerance as well. The beginning of diabetes is often silent, and there may even be very low blood sugars that are missed indicating too much internal insulin secretion in the beginning. Alot of lows lead to nerve damage, since the nerves are not getting enough glucose to run the energy mitochondria.

So...
Get some Kefir... at least 4 ounces a day.
Metanx RX if you prefer (has active methylB12, active B6 and methylfolate in it)
Fish oil
R-lipoic acid 100mg a day and Benfotiamine 300mg a day.

Eat magnesium rich foods, like beans, nuts (almonds), etc.
And see what happens in 3 months.
Consider going gluten free, do the research on that.
These are the main items. Some of us do more, some less.
But most people will respond to this list in some way.

Make sure you have normal kidney functions, and that your doctor
approves.

Hello MrsD

Again, impressed and appreciative of your knowledge, particularly details!

Keep in mind, I lost this large amount of weight in 2002! Yes, diet was extremely low fat and the first subtle neuro symptoms started near the end of this diet, but not troublesome until several years later, is this possible to present in this 'delayed' fashion if the diet was a causal factor? If so, I have to wonder if any deficiencies, absorption deficits etc played into this?

Excellent points in distinguishing numbness vs. tingling and you're correct! I can remember at times in life when a body part would 'go asleep' from compression. Sure enough, the first reaction would be numbess and then tingling and thankfully it would subside, unlike what we're talking about today!

Tried gluten free for 8 months in 2008, unfortunately I don't think it helped.

Have noted your comments about Spectracell, any idea what people self-pay for testing at that lab?

Interesting comments about my B12 level and the possible for nerve problems :confused: Neuros never thought it a problem, I tend lean toward your reference. One thing I also wonder, my 500ish reading may not have always been THAT high? Really need to aim for 1000 and get the D3 up as well.

Trying Kefir is easy enough, will do as well as suggested doses of Alpha Lipoic, etc. As stated, tried some of these before, but didn't continue. Hoping it's not too late to improve things?

Excellent points about the glucose testing. My relatives would be more than happy to help.

IMPORTANT: forgot to add something earlier! Back in early 2005 when I really started with the tingle/burn/zaps, I immediateley thought 'diabetes'. At the time I bought a bottle of keto-diastix? Familiar? Anyway, I NEVER reacted on the glucose portion of strip, but numerous times I would show 'ketones' in my urine. Again, back in '05. Could this be a clue to anything?

My blood testing for fasting levels of below 100 were all between 2007-2010,well after the 'ketone' readings in 2005

For what it's worth, I have the near inability to sleep for more than 2.5 hours straight IF I do not consume fairly large amounts of carbohydrates/calories? What could this indicate metabolically? I've have this tendency well BEFORE any nerve problems in 2005.

I know I've given alot of info and much of it seemingly disjointed. Besides my nerve pain/sleep issues/right ear tinnitus, actually feel OK. But there's probably NO irony in the fact that all my health problems/symptoms seems to relate to the nervous system and nothing else.

Question is 1 of 2 things? Can I find/improve the cause and/or what meds can cover the symptoms to live a better quality of life? Certainly many here grapple with the same questions? Again, I'm just dealing with sensory dysfunction for which I suppose I should be thankful :confused:

Thanks again MrsD for your unselfish sharing of info/knowledge! Perhaps if I followthrough long-term with some of what you're covering, something might help symptomically?

Kindest Regards,

JB :grouphug:

It takes time for people to get into the PN status, it can creep along quietly.

I had terrible foot problems from being hypothyroid, and once that was treated, it took a YEAR of tingling in my feet before they came back! They had reached the numb stage after the initial painful stages in the beginning.

You will want the new R-lipoic--the stabilized one---for best results. The old Alpha lipoic requires high doses, and 1/2 of it is actually inactive. So the new one is preferable and will give faster results. Doctor's Best brand is the best I've used. It is giving me lower A1C's whereas the others did not.

So since it takes time for you to get where you are now, it will take some time to recover. Supplements are not drugs, and not typically fast acting, unless some extreme deficiency was present.

Ketones show up when you are not eating alot of carbs. They show up as fat is burned for energy.
I do know the sticks can be corrupted and read erroneously. But I don't know the exact chemistry of them. They were used commonly for monitoring the Atkin's diet, which was very low carb.

Carbs do help one sleep. This is because they enable release serotonin in the brain. Also a heavy carb meal late will boost insulin levels which are sedating, BUT...then you crash and wake up and you dip low. You might try, slow carbs like lentils, or black beans, green peas. I found a nice Progresso Soup with lentils, and typically use 1/2 can at night with other veggies mixed in. These are very nice for night time because they don't wear off.
I also use Bush's black beans..these are easier on GI tract than red beans for me.

Also to consider is nightshade veggies. I cannot tolerate potatoes anymore...they have solanine in them, and make me burn terribly. Histamine containing food also causes paresthesias.
I have a new histamine thread here:
http://neurotalk.psychcentral.com/thread161714.html
I just ordered the Daosin-- and it came last night. I haven't tried it yet...but I gave my cat who has the histamine tumors, a 1/3 dose just now...to see how she reacts. Histamines in foods or histamine releasers can give PN type symptoms in some people. Tomatoes also are a big culprit.

Methylcobalamin is the cofactor for converting serotonin to melatonin, for sleep BTW. Low methylB12 and you won't be making melatonin much.

Low blood sugar makes it difficult to sleep... I was waking up having lows, and when I tested I found that fact.

You might ask the doctor for amitriptyline for bedtime. I don't see that you take an antidepressant? Amitriptyline showed recently in a research study that it increase nerve growth factors, and that makes it especially good for PNers.

I started it last Thursday, 10mg at bedtime, and it really helps you SLEEP... I have old shingles neuralgia in my right arm, which often wakes me up. So far I've been in a kind of coma in fact with the amitriptyline! LOL Today I am a bit more alert, but for two days there I was napping like mad.

If the Neurontin is not working...I'd taper off it. While doing a drug thread here I found several meta-studies claiming it is only effective in about 1/3 of patients. If it doesn't work, get rid of it.
It will require a taper, for safety if you have used it a long time.

I don't think you need other vitamin tests at this time. Just take
a good product like Centrum Senior, (I use the Costco version of that) for the rest of the vitamins.

For now, you may see improvements with what I've suggested. Those are the "big guns" so to speak.

I just had to jump in here and say...........

[U]YOU ARE AWESOME[ MRSD!!!!!!!!!!/U]

Not that everyone on this site isn't awesome- but you put all this information together for us - thank you, thank you, thank you, thank you, thank you - one billion, trillion, -mczillion (as my daughter says) times! You make this information accesable and easy to understand - its great and really helpful. It doesn't make one feel small or degraded as md's sometimes do when they try to communicate. You are also doing all this work for free and the only reward you get is our appreciation - you have it 10,000 billion, trillion, -mczillion times!!!!!!

:You-Rock: :Thanx: :Dancing-Chilli: :Grin-Nod: :Thank you:
:winner_first_h4h: :Tip-Hat: :Bow:

X2 on Blaine's comments!

MrsD's response to my situation was as thoughtful and well-sourced, if not MORESO, than just about any doctor I've seen and paid a lot of money to in the last 5 years! I've seen some well-meaning practitioners, but was never given the level of detal as found on here! For ex: the fact that my Vit B12 results may NOT be that great after all etc!

She has (and others here too) have motivated me to get serious about taking these supplements and to take better care of my overall health. I've been a little complacent recently thinking that I'm in pain, what's the use, but I think there IS a better way and intend to follow that path!

I had some diagnostics drawn today that may or may not shed light on the cause of the sensory problems, but I have hope for at least some degree of improvement over time IF I follow this regimen.

I am also interested in better methods of covering the neuro pain, so will be studying the appropriate meds thread for that!

But again, the world is a much better place with people as unselfish as MrsD :hug: Hope to repay the favor sometime...

Thanks to everyone here :grouphug:

JB

Hi better12,

Your story is remarkably similar to mine and I've had similar questions.

I'm currently looking into mitochondrial issues and supplements. Hypothyroidism can lead to PN. Endocrine problems in general, too.

Low temps are a v. common symptom of hypoT. Do you get cold hands/feet? Is your core temp lower than 98.6F?

I've read that mitochondrial dysfunction can mimic hypoT. I was going to try the hypoT supplements but first I'd like to try mitochondrial because that's probably the root problem.

I'm already taking B12, but I'm looking at trying Acetyl L-Carnitine (rec'd on this board) and D-Ribose.

Your Mg idea is good. But absorption rates can be low, so topical is another option. If you haven't already, check out Dr. Carolyn Dean's book on Mg.

I've been taking Mg for months to deal with PN. I don't know if it's helped, but it's so important for other health issues, I don't plan to stop. It also has the power with long-term use to detoxify heavy metals in the brain.

My PN has got worse this year and seems to get a little worse whenever I lose weight. I've lost 30 lbs this year already, mostly by accident. PN gives me insomnia... I end up sleeping when I used to be eating... I miss meals and lose weight.

Keep in mind, too, that toxins in fat can get released into the bloodstream by weight loss. If you were once working in a toxic place that could become a factor. Toxins can get stored for years.

mrsD, could we please have a sticky thread on Testing? All the different kinds of PN-related tests, including comments on reliablility/interpretation, as you were noting in this thread?

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! ;)

Do your feet turn red and hot when the pain is bad, especially after walking or standing a long time? Could be Erythromelalgia if it gets bright red.

Hello RoseThorn:

Thanks for the tip! I've read about the said condition and that doesn't really describe my scenario. My pain is all invisible, no swelling/redness however my soles can feel warm, but my guess is that they always did, even before I considered them painful?

I remember seeing a video of a teenage girl at youtube with symptoms that you describe, she had the same diagnosis. I believe she got excellent relief from methadone after many failed drug therapies - not endorsing this, just passing it along.

Take Care, JB