[TommyE]

I have some questions regarding neuropathy and what some of you have experienced over the years. My continuous burning/pain had a sub-acute onset and started in May '11.

1. All my tests so far have come back normal, except Vit D, which is now normal. NCV/EMG normal, blood tests normal, MRI/Cat scans normal etc. The question is, am I considered "Idiopathic" or does "Idiopathic" mean an abnormal NCV/EMG but with no known cause? Don't understand the term.

2. With all the supplements being suggested and taken, are they in fact working for anyone and to what degree? Since supplements are not regulated by the FDA, how do you known you are getting what you pay for? Are the manufacturers verified by the USP?

3. Was anyone taking anti-depressants before their PN started? Has anyone heard of a correlation between anti-depressants and PN?

4. I haven't had a solid bowel movement since this started, not really diareaha(sp), just soft and pasty, sorry Had the blood tests for Celiac already, negative.

5. Does anyone experience blurry / double vision periodically? Is this from the gabapentin or neuropathy?

Thanks,
Tommy

[Dr. Smith]

Tommy,

Sorry, I'm not a veteran, but I'll try to answer some of your questions as best I can....

1. Idiopathic means "arising spontaneously or from an obscure or unknown cause" regardless of test results. Sometimes tests can reveal/suggest a cause; other times, there are just results/abnormalities that can leave doctors scratching their heads. This doesn't mean that there is no cause; it just means that the cause is not yet known. Diagnoses can change as more information/knowledge is learned.

2. Some of the supplements are indeed working for me (and others) to different degrees. My burning pain is gone except when I really overdo things. My pins & needles, shocks, and needle jabs pains are ~90% better. My numbness remains, but I believe there has been some improvement; it no longer feels like I'm walking on bunched up tissue under my toes.

I buy quality supplements from labels I recognize and that have been recommended here. I don't know about USP verification (mrsD may), but I know I'm getting what I pay for by both my test results and "how I feel" results.

3. I have taken several different antidepressants in the past, short-term. There was a gap of several years between then and my PN beginning, and I have no evidence of their being a cause. Many antidepressants are used in the treatment of PN pain.

Google: peripheral neuropathy antidepressants

MrsD has a thread on Medications That May Cause Peripheral Neuropathy

4. No idea.

5. Blurred vision has been reported as a side effect of gabapentin (as has diarrhea, FWIW). For many/most people, the side effects fade/resolve within a few weeks. Some (e.g. drowsiness, weight gain) may take longer or continue.

Google: gabapentin side effects

Blurred vision may also be associated with peripheral neuropathy.
http://neuropathy.me/Peripheral%20Neuropathy.htm

Hope this is some help.

Doc

[mrsD]

Choosing supplements is confusing.

I stick with brands with a good track record, who label their products with GMP or USP, and who label their products accurately (no nonsense). I avoid "proprietary blends" which are ways to obscure contents. I also avoid shot gun mixtures, because you cannot adjust your doses to your own needs and are forced to use the ratio in that particular brand.

Examples of good companies:
Doctor's Best
NOW
Country Life
Puritan's
LEF ( but expensive and sometimes labeling tricks)
Jarrow
NatureMade
Schiff ( I use their Melatonin)
Nature's Way (good for herbs)
Source Naturals
Solgar (tends to be a bit more expensive, but is quality)

I buy online almost exclusively. I avoid GNC and other shops locally (they tend to be very expensive). You can find some quality brands in some natural food stores like Whole Foods. Online places like iherb.com have detailed supplement ingredients, including inert ingredients, and allergenic labeling. That is one reason I often recommend them. They are affordable and fast too. Amazon has picked up the slack with free shipping on $25 for many supplements now, but they do not offer lots of labeling info which is a negative. You have to KNOW what you want to use Amazon. I am getting my Doctor's Best products from them now mostly (3 things I use daily, benfotiamine, RALA, SunTheanine).

example of iherb page:
http://www.iherb.com/Jarrow-Formulas...enges/117?at=0

I find quality at Costco, and Sam's club.

The trickiest thing is understanding the newer forms of some vitamins and supplements. Lipoic acid and B12 have new data on them, and hence not all companies are on that band wagon yet. So for example the R-lipoic acid from Source Naturals is just not as good as Doctor's Best. But Source Naturals is a quality brand anyway, they are just not using the new stabilized form of R-lipoic.

A quality manufacturer also has informative and useful web pages. Not splashy fancy ones. Quality places do NOT make you look for ingredient lists...and are helpful and give their address and/or phone # on them for contact. Places without contact information should be avoided.

But even within a quality place there can be subtle differences.
For example NatureMade l-lysine has a propylene glycol additive in them, which is a laxative and I think should be avoided. Puritan's Pride capsules do not have this in them.
This is a matter of understanding most consumers do not have.

I've been researching things for over a decade in this area, so I have more intuitive responses than others. You can always post, a question and have me look to see what I see there.
That is one reason this board is helpful. Sharing experiences.

Regarding the bathroom question:
Do you have a history of antibiotic use? If so, you may have damaged beneficial bacteria in the bowel, and/or Candida overgrowth. The Candida can upset your metabolism, and send toxins that give PN type symptoms. If you suspect this, try using Kefir daily. This has 12 probiotic organisms in it and may help re-establish normal things for you. Some SSRI antidepressants loosen people too. This is because they stimulate serotonin in the bowel. TCAs like Elavil do not do this and tend to be constipating.
Also it may help to use Metamucil (either powder to mix into liquids or capsules with lots of water). Metamucil will adsorb toxins in the bowel and normalize movements when things are upset. You must space this around RX medications however. If you use a magnesium oral supplement (esp OXIDE form) you may be loose too. Avoid OXIDE.

Kefir:
http://www.lifeway.net/

I started Kefir in September and it has been one of the most valuable things I've done for myself.

[glenntaj]

--begs to be investigated for autoimmune, toxic, and some nutritional causes.

I do sound like a broken record with this (and there's a reference made for people over 40), but I highly doubt people have had comprehensive serological work-ups for neurological symptom causes unless they've been to specialty centers or practices (often at major research hospitals). For instance, most doctors know to test for anti-nuclear antibodies, and eliminate vascular/connective tissue autoimmunities if these come negative, but few have the expertise to test for specific antibodies to peripheral nerve components.

And this is why I always direct people to the very comprehensive Liza Jane spreadsheets, so they can compare what they've had tested and track results over time:

www.lizajane.org


. . .as well as the Quest/Latov paper on serological testing for neuropathy:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

[TommyE]

Thanks for the information and links. I'm glad to hear you have experienced some relief. Right now I'd take 10%.
Do you also take any medications like Gabapentin, Lyrica, Cymbalta or just strictly vitamins and supplements?
My concern about the antidepressants and neuropathy come from a google search on Celexa, a few instances of people saying it caused their neuropathy. I had been on Lexapro, a clean version of Celexa for a couple of years and my current doctor has prescribed it for me now.
My vision really a concern for me, I have pigmentary glaucoma and have already lost sight, 30%, in my right eye. Now comes the blurry/double vision, it's scarry. My Opthamalagist can't find a reason.

Thanks again,
Tommy

[mrsD]

The only drug I can think of right off hand that can cause glaucoma is Topamax. It is sometimes used for chronic pain and/or headache.

There are drugs contraindicated for certain types of glaucoma, which are anticholinergics basically. Some antihistamines, and antispasmotics for the GI tract.

however there are autoimmune causes of vision loss. One of them is uveitis.

http://en.wikipedia.org/wiki/Uveitis
(the photo on this page is not reflective of all patients by any means so don't go by it).

A friend of my husband has this, and just had her thyroid removed too. And is now on methotrexate.

[TommyE]

Originally Posted by glenntaj

--begs to be investigated for autoimmune, toxic, and some nutritional causes.

I do sound like a broken record with this (and there's a reference made for people over 40), but I highly doubt people have had comprehensive serological work-ups for neurological symptom causes unless they've been to specialty centers or practices (often at major research hospitals). For instance, most doctors know to test for anti-nuclear antibodies, and eliminate vascular/connective tissue autoimmunities if these come negative, but few have the expertise to test for specific antibodies to peripheral nerve components.

And this is why I always direct people to the very comprehensive Liza Jane spreadsheets, so they can compare what they've had tested and track results over time:

www.lizajane.org


. . .as well as the Quest/Latov paper on serological testing for neuropathy:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Thanks for the link to the lizajane spreadsheets! They certainly will make it easier to track my testing instead of digging through a stack of papers.

I have been using the Quest Diagnostic guide with my primary neurologist to systematically eliminate causes. I have had every test on the guide except the Parvo and Anti-Sulfatide. I was suppose to have the anti-sufatide, but the Quest Lab didn't run the test along with the other antibody tests. I've also had a Spinal Fluid analysis. All tests are normal or negative.

TommyE

[mrsD]

Well, based on your history posted here I see 3 culprits for PN.

1) diabetes

2) toxin exposures (solvents and other strong chemicals)

3) Previous Zocor use.

That is not looking too idiopathic to me!

You may recover some damage, because of the Zocor over time. But that depends on how much damage you have etc which is difficult to prove.

2) The toxins may or may not improve with time.

3) controlling blood sugars may help with diabetes.
Supplements showing promise for diabetes, are lipoic acid--I'd use the best one as we've posted before, benfotiamine, and
acetyl carnitine. All have papers on PubMed for diabetic neuropathy.

[TommyE]

Thank you for all the information on supplements and suppliers!

Looking back, have you had any significant improvement from the supplements? Are you on medications, Gabapentin, Lyrica, etc for PN?

I am concerned about getting a quality supplement and not just putting some inert ingredients in my body, especially if they come from China.

I haven't used antibiotics in years and I was off the anti-depressants for 5 months with no improvement in my bowel movements or PN. Could it be a autonomic nerve issue, i don't sweat either, haven't had to use deoderant since this started in May. I've been thinking of using a probiotic or yogurt to help with the bowel problem. I haven't started a magnesium supplement yet. I been thinking of getting my PDoc to send me to a Gastoenterologist, but with all the other specialists I've been seeing it's another hoop and I'm losing the will to keep on going to doctor after doctor. I'll definitely check out the Kefir. I've read a little on the Candida causing PN, who knows right?

[TommyE]

Originally Posted by mrsD

Well, based on your history posted here I see 3 culprits for PN.

1) diabetes

2) toxin exposures (solvents and other strong chemicals)

3) Previous Zocor use.

That is not looking too idiopathic to me!

You may recover some damage, because of the Zocor over time. But that depends on how much damage you have etc which is difficult to prove.

2) The toxins may or may not improve with time.

3) controlling blood sugars may help with diabetes.
Supplements showing promise for diabetes, are lipoic acid--I'd use the best one as we've posted before, benfotiamine, and
acetyl carnitine. All have papers on PubMed for diabetic neuropathy.

Mrs D

I had a follow up with my Endo last week and my blood sugars are still spiking in the pre-diabetic range 2 hour post prandial after a relatively low carb meal. i'm scared to think what they would be if I ate like I used to, chocalate, ice cream, potatoes, rice, second helpings on everything.

I'm off the Actos and on Metformin now. I read the Metformin will help with my cholestrol, have you heard that? Still off the Zocor.

So far the Metanx has not helped, but it's only been 3 weeks. My Endo wants me on it for at least 2 months as a trial.