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Old 10-25-2013, 06:51 AM #1
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Default I think I have PN?

Hi Group,
I am new member but have been reading the blogs for a few days. I am trying to catch up with all the posts. I would like to introduce myself and seek help from you with my symptoms.

I started experiencing a burning sensation above the back of my #L knee cap in May this year. This burning sensation then extended to my #L heel and saddle area. As I had had prolapsed Disc of L5 and S1, I have assumed this was caused by my disc problem. I saw a neurosurgeon and had an MRI, and both the physical examination and MRI result was negative. The burning sensation in my saddle area had disappeared. However, my symptoms now had spread to my #R leg and hands (most of the time), face, back, shoulder etc... The symptoms can be transient and include - tingling, burning patches in both legs, my #R foot felt like a low electric current (buzzing) constantly with different intensity and sometimes this occurs in my #R foot. My hands also feel like they are buzzing, both legs front and back now have an altered sensation (when I sit I feel like I am sitting on sandpaper and when my pants touch the skin, the material feels scratchy). I also have the sensation of prickling, water droplets splashing on my legs, and now hands sometimes.

Originally I thought this is menopausal symptoms but now I am not sure? I started using bio-identical hormone treatment a week ago and yet to see any result. I have had full blood tests and the results were not remarkable. The vitamin D is 78 nmol/L, Vitamin 12 is 1155 pmol/L, Thyroid Function is Free T4 17.1, TSH is 4.96 - slightly high (Dr. said is borderline under active), Glucose Serum 5.0 mmol/L. I had a 24 hour urine screen for hormone analysis but am still waiting for the results.

I am seeing a Neurologist in November but would really appreciate if someone can enlighten me whether my symptoms are PN? I am a 51 year old female from Australia and I don't smoke or drink. Thank you so very much for reading this. Yu Ping (my first name).
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Old 10-25-2013, 12:04 PM #2
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I cannot say if you have PN, but those symptoms sound fairly typical of PN. If it is progressing quickly then you need to be aggressive in trying to find a cause. Seeing the neurologist is important. He should do a physical exam on you and ask if there is any family history of neurological problems. I'm no expert, but an auto-immune disease might be a consideration when PN comes on quickly.

I have found Dr. John Hayes' podcasts very interesting: http://www.beatingneuropathy.com/

Although it is not a widespread belief (applied to PN), I believe a healthy diet, exercise, stress management, and support are very important to PN and a wide variety of illnesses that we find in modern times. If you are eating the typical Western diet (plenty of meat, dairy products, refined foods, not many unrefined plants) then you might work on this. Diseases like heart disease, high blood pressure, diabetes type II, prostate cancer, etc. are being reversed with what I suggest. There are not any official studies applying this to PN as far as I know. Some of my PN symptoms reversed in a few months of eating a healthy diet & exercise. Authors I like are Dr. Dean Ornish, Dr. Joel Fuhrman, Dr. Neal Barnard, Dr. John McDougal, Dr. T. Colin Campbell, Dr. Caldwell Esselstyn.

There is good info in the "Stickies" of this group, it's just a lot to read thru to find the gems.

Vitamin B-12 deficiency is high on the list for causing PN. You could safely take 1000 mcg (1mg) per day of the methylcobalamin form. Also see my attachments. Good luck, tell us how it goes. I'm sure some others will reply.
Ron

Last edited by Chemar; 10-25-2013 at 02:04 PM. Reason: attachments had copyright so not allowed as per guidelines
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Old 10-25-2013, 02:14 PM #3
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My attachments were not allowed, but see if you can access those two images here: https://sites.google.com/site/basicpoke/Home/neuropathy
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Old 10-25-2013, 06:10 PM #4
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Default Additional symptoms I forgot to mention

Hi Ron, Thank you for your reply and information / links. I really appreciated this information and will look into it more.

In my previous post, I forgot to mention first symptoms which concerned me -the feeling of stiff brush sitting on the back of my #R thigh. The outcomes of my previous Prolapsed disc L5 and S1 left me with a 20cm numbness on my #R back thigh and weakness of my #L foot (unable to toe raise, now this has improved, I can now do it 5-6 times with single leg). These two areas are the first manifestation of my symptoms. Given the back of #R thigh is numb, when the sensation occur, I thought "Yipee I am getting my sensation back" how disappointed I was this is not the case and the constant buzzing feeling on my #L foot. I think when my PN strikes, it attacks the previous injury (weakest) first. All other symptoms come and go, only these two stay.

You mentioned about Vitamin 12 deficiency, my blood test - 1155 pmol, shows I have more than normal ranges of V 12, I was taking 2 B Complex with V12 (cyanocobalamin, will investigate the methylcobalamin form) total of 100mcg. When my blood test came back, it read 1155 pmol, I now stopped taking them, thinking too high??? V D3 is 78 (Dr prefers to see it increase to 100) and I am taking 2 X1000IU.

I think my diet is pretty good - fish 2 days a week, chicken and not much red meat and I also make my own vegetable juice. I also do daily stretching exercises- lower limbs and have just started my first spinal stabilization class.

What do you think about the above? Thanks again, Yu Ping.
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Old 10-26-2013, 12:30 AM #5
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Quote:
Originally Posted by yupings View Post
You mentioned about Vitamin 12 deficiency, my blood test - 1155 pmol, shows I have more than normal ranges of V 12, I was taking 2 B Complex with V12 (cyanocobalamin, will investigate the methylcobalamin form) total of 100mcg. When my blood test came back, it read 1155 pmol, I now stopped taking them, thinking too high??? V D3 is 78 (Dr prefers to see it increase to 100) and I am taking 2 X1000IU.
Hi Yu Ping, welcome.

If your B12 has been that high since before your symptoms began, I think it's likely that the cause of your PN may be something else. If you read the STICKY - The Vitamin B12 Thread:, B12 is very safe, and most likely cannot be too high for people with PN. I think you can resume taking it, though after reading some more, you may want to switch to the methyl form.

Some people here take more D3 than that as well (I take 5000 IU/day), so you could try increasing what you're taking now. There is a thread on Vitamin D here:
New medical information on Vitamin D + videos:

Doc
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Old 10-26-2013, 04:11 AM #6
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Default Thanks Dr. Smith

Hi Dr. Smith, I started taking Complex B about 2.5 months ago - after the PN symptoms had started. The previous reading was 434 pmol/L. I looked around for a methyl form of VB12 at the pharmacy and several natural food shops this morning, but couldn't find it. I may need to order it from US.

I will increase V D3 and see how it goes. The funny thing is, Dr. Smith, my symptoms tend to be quite mild in the morning and as day progresses, the symptoms progress as well. So poor posture? tired muscle? increased stress? When I wake at night, most of the time, I hardly feel any symptoms though.....

Thank you for taking the time to give me this information. Yu Ping
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Old 10-26-2013, 08:48 AM #7
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Quote:
Originally Posted by yupings View Post
Hi Dr. Smith, I started taking Complex B about 2.5 months ago - after the PN symptoms had started. The previous reading was 434 pmol/L. I looked around for a methyl form of VB12 at the pharmacy and several natural food shops this morning, but couldn't find it. I may need to order it from US.
A couple of things... In searching the archives for Australia methylcobalamin, I find many posts mentioning that iherb.com ships to Australia (I've never purchased from them so I cannot comment either way).

That search also turned up the following: (clicking on the > will take you to that post/thread)
Quote:
Originally Posted by Martin_12 View Post
A minor point: In the USA B12 is measured in picograms/mL (pg/mL)while in Australia the units are picomoles/L (pmol/L). According to the AFP paper by Oh you need to multiply Australian results by 4/3 or 1.3 to get USA values. So your 256 pmol/L is equivalent to approx 340 pg/mL in the USA. Wikipedia gives a similar conversion factor. Your value is still low.

Make sure you are taking at least 1000 micrograms of methylcobalamin per day on an empty stomach as Mrs D recommends. I take 5000 micrograms/day. There are no known adverse effects of high doses.

Martin
Quote:
I will increase V D3 and see how it goes. The funny thing is, Dr. Smith, my symptoms tend to be quite mild in the morning and as day progresses, the symptoms progress as well. So poor posture? tired muscle? increased stress? When I wake at night, most of the time, I hardly feel any symptoms though.....
Any/all/none of the above.
One thing about PN that stands out (on this forum and elsewhere) is that it's a bit like fingerprints—no two people are (affected) exactly the same, though there are/can be similarities. The same can be said for spine issues. PN symptoms can also be affected by a wide range of variables (in addition to those you mentioned)—diet, time of day, hormones, endorphins, circulation, weather, et al.

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Old 10-26-2013, 11:33 AM #8
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Yu Ping, I have been ordering from iherb.com for years, including Jarrow B12. I recommend them. As for your pain being good at night and progressing through the day, intuitively these sounds consistent with it being related to your spinal injury. Your spine is under little to no stress while lying down, but is used and abused as we go through the day. If the pain is radiating from your spine, I believe this means the condition would be called radiculopathy, which is a neuropathy. It may also be polyradiculopathy and/or polyradiculoneuropathy. But I'm no expert on spinal injuries.
Ron

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Old 10-29-2013, 03:31 AM #9
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Default Oh no, not from my lumbar spine!!!

Hi Ron,
I certainly hope my PN symptoms (I think of symptoms rather than defining by pain) are not related to my spine. The MRI did not detect any nerve impingement and the physical examination by the neurosurgeon in June i.e. legs being manipulated and raised, produced no pain. Also my symptoms are now spread to my hands and arms. Occasionally shoulder, neck and face. I would of thought if symptoms are related to L5/S1 injury, it would only occur to the lower extremities, not all over my body including hands and face etc. I am really praying these are not stemming from my lumbar spine....I am really terrified of any spinal involvement!

I have just placed order with Iherb for B12 and Amazon for Morton Epsom Lotion (expensive postage to Australia). I am seeing my GP tomorrow, hopefully I can get a straight answer from her whether she has other experience from other patients or her honest assessment (she tend to be very conservative in her answers). Thanks again. Yu Ping
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Old 01-04-2014, 01:27 AM #10
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A user asked for more info on the topic of healthy diet I mentioned here, *admin edit*
Since my PN symptoms started, I have read many books on reversing and preventing disease. Several doctors have discovered that patients can reverse disease with a combination of diet, exercise, stress management, & social support. I believe that diet is the most important of these, as it is the one most emphasized by many of the doctors involved. Diseases/conditions reversed and prevented with diet include obesity, heart disease, many cancers, type 2 diabetes, autoimmune diseases, high blood pressure, and high cholesterol.

My logic is that what prevents and reverses these diseases could quite possibly reverse peripheral neuropathy as well. I don't know this for a fact, but I think it's the best shot those of us with peripheral neuropathy of unknown cause have. I have read of several cases of dramatic improvement using similar lifestyle changes, and have experienced improvement myself. Yes this is only anecdotal evidence and does not prove anything. I have some support for my position from Dr. T. Colin Campbell in The China Study:

"PRINCIPLE #7--Nutrition that is truly beneficial for one chronic disease will support health across the board." p. 237

I believe exercise is also quite important in reversing disease, so don't count it out. It's just that I find diet emphasized more in the literature that I have read. Your best bet is combining diet, exercise, stress management, & social support.

There is a vast amount of evidence showing that unprocessed plant-based diets, and eliminating animal products, reduces disease and increases lifespan in humans. The books I recommend below will point you in the direction of this evidence. Some lifestyle practices cause the expression of genes in a good way that reverse and prevent disease. Other unhealthy choices do the opposite. We are not a slave to our genetics.

According to Dr. Joel Fuhrman, leafy greens such as romaine lettuce, kale, collard greens, Swiss chard, and spinach are the most nutrient-dense of all foods, so he recommends eating a large quantity of these foods. This is what I am beginning to do. One of his main points is eating high nutrient-density foods in order to obtain a high nutrient to calorie ratio. This also means avoiding processed sweeteners and concentrated fats such as cooking oil.

From World Health Organization: "Households should select predominantly plant-based diets rich in a variety of vegetables and fruits, pulses or legumes, and minimally processed starchy staple foods." (http://www.fao.org/DoCREP/004/Y2809E/y2809e00.htm, chapter 2)

Assuming that most of us are overweight, he insists that you do not need to go hungry on a plant-based diet in order to lose weight. You can actually eat a larger volume of food than you did before on the standard American diet, it's just that plant foods have much lower calorie density than the oils and fats in an unhealthy diet. He covers this topic in-depth.

You will find objections to the whole foods plant-based diet I propose. Of course those involved in the poultry, beef, pork, and dairy industries will object because this challenges their very way of life. But there are no doubt more objective parties that have come out against this as well. I think that many people don't want to believe vast dietary changes can help them because this requires a great deal of work and committment. And meat tastes good. This is only human nature.

So if you are skeptical, I ask you to check this out yourself. And I invite you to join me and see just how much better we can make our neuropathy.

Here are a few websites for more support. There are many more.

http://www.pmri.org/ -- Preventive Medicine Research Institute
http://fatfreevegan.com/ -- healthy recipes
http://groups.yahoo.com/group/Eat-2-Live/ -- good forum for support, recipes, etc.

Recommended reading:
Eat To Live, Joel Fuhrman, M.D.
The China Study, T. Colin Campbell, M.D.
The Spectrum, Dean Ornish, M.D.
The McDougall Program, John A. McDougall, M.D.
Foods That Fight Pain, Neal D. Barnard, M.D.
Forks Over Knives, editor Gene Stone
Healthy Aging, Andrew Weil, M.D. (condones some meat, especially fish)
Anticancer, David Servan-Schreiber, M.D., PhD
Deep Nutrition, Catherine Shanahan, M.D. (condones some meat)

*admin edit*

Ron

Last edited by Chemar; 01-04-2014 at 07:54 AM. Reason: NT guidelines
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