Suspected PN
 

Hello folks

Let me introduce myself first. I am having symptoms of suspected peripheral neuropathy for about a month or so now. The symptoms include pins and needles in my hands , feet , arms and legs at random places in random times, tingling and twitching mostly in the evening and nighttime. My doctor does not think so and has ordered bloodwork (fasting sugar, choresterol, cbc etc). Last month did liver enzymes which were normal (I take allopurinol for gout and levothyroxine (synthroid) for my thyroid). Dr. Google suggested using R-Alpha Lipoic Acid to relieve neuropathy symptoms , so I bought some from the internet. So far, I have been taking r-ALA alongwith B12 supplements for about 2 weeks , but the symptoms seem to persist. I know its too early to expect any results.

My question is how long should I wait before abandoning the idea of using R-ALA for neuropathy? What should be the next steps? Should I ask for a referal to the neurologist? Any other supplements that I should try alongwith R-ALA and B12?

Thanks in advance

Hi P3000g

Welcome to NeuroTalk :).

There is some evidence that R-ALA can help with diabetic neuropathy but I don't whether it is effective for neuropathy arising for other reasons.

Alpha-Lipoic Acid: Uses, Side Effects, Interactions, Dosage, and Warning

Best wishes.

Thanks Kiwi

I am really hoping the supplements work. I don't want to take prescription meds for this, considering the side effects.

BTW, Is 600mg a day (two 300mg timed releases) too high a starting dose for R- ALA?

From the link above between 300-1800 mg/day is suggested for diabetic neuropathy.

What study says Alpha-lipoic acid does anything?

It is discussed here, together with other drugs which have been used in management of diabetic neuropathy.

Diabetic neuropathic pain: Physiopathology and treatment

it says in that report
alpha lipoic acid, offers little benefit

That's not what I see in the report, gert?

The quote I posted is from the link kiwi provided you. Diabetic neuropathic pain: Physiopathology and treatment

The R vs S (synthetic) - Synthetic type may be less benefit.. so best to get non S..
Info--
R-Form Alpha-Lipoic Acid vs. S-Form Alpha-Lipoic Acid | ConsumerLab.com

There are other antioxidant and anti-inflammatory supplements that may be beneficial.
antioxidant and anti-inflammatory supplements at DuckDuckGo

A good resource for checking brand ratings..
ConsumerLab.com - independent tests and reviews of vitamin, mineral, and herbal supplements | Consumerlab.com

Adding to what Jo*mar wrote, this thread discusses the differences between S-lipoic acid and R-lipoic acid.

https://www.neurotalk.org/peripheral...poic-acid.html

Here is what the Linus Pauling institute says about Lipoic Acid


Please google "linus pauling institute lipoic acid" as I am not allowed to post links being a newbie

**


What is really confusing is there is no clear consensus on which form (R or the racemic RS form is better). **

"alpha lipoic acid, offers little benefit"

Admin Note: Sorry but this post has also been edited as we are not allowed to have copy/paste from websites that have Copyright. Only the link to the article is allowed when the poster has reached linking default membership

You should absolutely ask for a referral to a neurologist, who will do EMG tests to determine if you have peripheral neuropathy or not. I have SFN (non-diabetic) and have been taking ALA for a year or so. Honestly, I don't think it's had any affect. I've read all the literature, and the neurologist I saw said it won't have any negative effect. But it's far and away not something you can expect to control your neuropathy, especially without doing more research into what might be the cause.

benfotiamine
 

Hi All

Thanks for all your insight.

Has anyone had any success with Benfotiamine?

Does it have the same effect as Alpha Lipoic Acid? Has anyone taken them them both? I am planning to add Benfotiamine to my regimen as well after hearing positive reviews about in in dealing with neuropathy

ok it says that the studies on the benefits of Alpha-linolenic acid are sponsored by the manufacturer of the Alpha-linolenic acid.

Gert, α-linolenic acid is a polyunsaturated fatty acid with a number of physiological roles. It is an essential fatty acid, which means that the human body can not synthesise it; it must come from dietary sources.

It is not the same thing as R-lipoic acid, which is a cofactor for enzymes like the pyruvate dehydrogenase complex.

You can also use our site search (up above in the solid bar, but I'll include the link) many specific meds or vitamins/supplements and symptoms have been mentioned here in the past -
https://www.neurotalk.org/search.php

diabetic neuropathy??
 

Thanks..

Last year my bloodwork showed elevated sugar, but no formal diabetes diagnosis ..

This year when PN flared up about a month ago, I was on a low carb diet trying to loose weight.. (I am about 40lbs overweight)..

When the doctor ordered bloodwork , everything came back fine. My question is:

Is it possible that , my elevated sugars already did the damage to my nerves, by the time I switched over to a low carb diet , so that the bloodwork could not detect any diabetes/prediabetes ?

I have a doctors appointment this week, and I am trying to formulate the right questions to ask, as some of the primary care doctors are quite dismissive about neuropathy

A couple comments on this thread:
-Metanx is a prescription "medical food" that is intended to treat peripheral neuropathy. the active ingredients are L-methylfolate, methylcobalamin and pyridoxal 5-phosphate. Obviously, you can buy each of these over the counter if you wanted to. I have taken all those supplements in combination and it does seem to help. Later I stopped taking the high doses of P-5-P because other studies indicate it can actually cause PN for some people. Unfortunately, nothing works for everyone and for some people nothing seems to work. You just have to research and try things to try and hit on the combination that works best for you.

-There is some research that seems to indicate that it is possible for nerve damage to be done while people are still in the pre-diabetic phase. But just like much of the information related to PN, there is no definitive proof of this.

Folks anyone with high uric acid and peripheral neuropathy?. I have high uric acid and prescribed 200mg allopurinol for that .. Currently the allopurinol is on hold to see if that is related to my PN.

I tested my Serum UA today and found it to be 7.8 mg/DL (should be 7.2 or below).


I found the link below which describes a possible link between Serum UA and PN

google "can high uric acid cause neuropathy?" and see the results as I cannot post links

The PubMed search "peripheral neuropathy uric acid" retrieves 106 papers. The main link seems to be with diabetic PN.

As far as I can see whether this is correlative or causative is unclear. See https://www.jns-journal.com/article/...18)30194-1/pdf.

Any such studies on uloric (febuxostat) and nerve pain? I was initially prescribed uloric for my gout but discontinued after 6 months partly because it caused some abdominal discomfort and partly because my insurance wont cover it. My doctor switched me over to allopurinol, which I had for a year before neuropathy symptoms surfaced. I am thinking of switching back to uloric .. Better pay from my own pocket than sufferer from this nasty neuropathy..

2 month update
 

Posting a 2 month update since my suspected PN symptoms started showing up : Symptoms seem to have lessened a bit , but not completely gone. I still get the odd pins and needles and tingling , burning sensations , mostly at night around bedtime , but it calms down after that and does not really affect sleep. My regimen, as you all know, is purely supplements based: R-ALA , Acetyl L- Carnitine , benfotoamine and a generic mens multivit. I also take levothyroxine for hypothyroidism and allopurinol for gout.

Is this normal progression for a PN ? a period of initial flareup followed by a reduction of symptoms? what path can we expect this to take in future? I have e neuro appt later this month. Not sure what to ask him . Should I ask for any bloodwork or any nerve conduction studies? Thanks a lot

Neuro visit update
 

Had my first neurologist visit yesterday. Did EMG which was normal.. Ordered bloodwork , which included B6, Copper, quantitavive immunoglobulins, and an MRI scan as well. But he was not convinced it was PN and advised a wait and watch approach. My impressions are most doctors/specialists are not really bothered unless the symptoms are serious/severe in nature. Also, not much feedback regarding supplements I am taking. Just " If they are helping, continue to take them".
That is where , forums like these are of immense help. Really frustrating when you are fighting something like PN and you don't know whom to approach.

Cause of Neuropathy is critical
 

The key to battling neuropathy is to find the cause of the neuropathy. If you are dealing with diabetic neuropathy, then you are in luck (sort of) as there are a number of things that you can do to fight it. Reducing blood glucose to normal levels, taking alpha lipoic acid, taking l-serine to help reduce the number of deoxysphingolipids in your blood stream and even losing weight can help with diabetes / pre-diabetes. There is also research in reversing diabetic neuropathy with selective M1R antagonists ( pirenzepine). By the way, if you are pre-diabetes, they have also found nerve damage with that as well. The system will not allow me to post links so if you are interested in the scientific research regarding diabetes and serine, pirenzepine, alpha lipoic acid just google it. You would als osee in google searches that prediabetes is linked to neuropathy.

I have my blood work results from my recent lab tests . Quantitative immunoglobulins, Vitamin B6, Vitamin E , protien electrophoresis and zinc were normal, copper was high ..

My previous blood tests including CBC, fasting glucose, B12 , thyroid etc were also normal.

Does anyone know the consequences of high serum copper? Does it have any relation to PN?

Copper toxicity can be neurologically problematic although a bit rare. Usually copper toxicity exhibits neurological issues like dystonia and tremor. These symptoms don't seem to be the symptoms that you are having.

Copper deficiency symptoms are more like the symptoms that you have but you have high copper levels not low.

Just out of curiousity, how high was your copper? Normally, our bodies dump extra copper pretty well so maybe the copper issues point to some other underlying issue that could be related to the neuropathy. Did your doctor have any opinions regarding your bloodwork or did you get an idiopathic diagnosis?

So far no diagnosis. Wating for an MRI in October. Copper was marginally high at 23.8 at umol/L (should be below 22).. My sugar (although "normal" as per the doctor) seems to be in the pre diabetic range (fasting 102 mg/dl and 160-170 mg/dl 2 hours post prandial) . That , alongwith my allopurinol medication for gout are my prime suspects at the moment

Here is what the report says about ALA,
"However, they have shown a moderate benefit in terms of pain reduction[132]. In a randomized double-blinded trial, ALA-treated patients reported a greater reduction in neuropathic pain when compared to placebo-treated subjects[122]. "

This what the article actually says about ALA:

"However, they have shown a moderate benefit in terms of pain reduction[132]. In a randomized double-blinded trial, ALA-treated patients reported a greater reduction in neuropathic pain when compared to placebo-treated subjects[122]."

anyone has any experience with gluten sensitivity and PN? I did a celiac profile test recently and found was high in gluten antibodies (deameditated gliadin), suggeting some kind of gluten intolerance..

I will go on a gluten free diet to see if it helps my PN symptoms

Abnormally high levels of antibodies specific for gliadin can indicate coeliac disease, which is an autoimmune disease of the gut.

This can be associated with PN.

See, for example Serology of celiac disease in gluten sensitive ataxia or neuropathy; Role of deamidated gliadin Antibody .

It took me a while to figure out that what you call coleliac disease in the British commonwealth is called Celiac disease here in North America :D

What do you eat?
 

That's one thing you should really really consider. My wellness doctor says Nothing white, Nothing out of a box, bag or carton, no dairy, no sugar, no night shade vegetables, as they all contribute to inflammation. Not a good thing. It might be worth considering, as thus far, my diet plus my organic vegetable deprived supplements have helped my neuropathy symptoms.

Two supplements I've used and posted about here are:

Inosine and Sphingolin and I've been off them for a while but have them on order to go on for a while again. You can do a search on them and give one or both a 3 month trial at least.

If it burns and tingles, it's neuropathy, don't need a doc for this dx. I've never talked to a doc about it as I've read enough here and now what I am dealing with. Gluten is a good thing to get rid of period.

Frankly I find this forum more helpful than the doctors. Both my Primary Care Physician and neurologist are clueless after a battery of blood tests, EMGs and MRI. The only positive result was the Celiac IGG Deamidated Gliadin antibody test which was 5 times the normal (it was 77.5 and normal should be below 15). And my PCP says it could be a false positive!

Ok , other than gluten sensitivity and allopurinol for my gout, I have found no other cause for my neuropathy. Here are the tests I have done so far:

1) B- Vitamins and thyroid - normal
2) Celaic antibodies - high demidated gliadin
3) autoimmune - Lupus and rheumatiod arthritis antibodies - normal
4) cervical MRI- normal
5) EMG - normal

Any other tests you guys suggest?
- Skin biopsy?
- Brain MRI for MS ?

Thanks

Ok Folks.. Update on my suspected SFN so far..

Some days are good (hardly any symptoms), some days are not so good(The burning,tingling, pins and needles). Have done a battery of blood tests (including celiac panel, rheumatoid A), MRI and Nerve Conduction tests. Nothing conclusive, except one of the gluten antibodies (dimedidated gliadin IGG) being high. So, on a gluten free diet for the last 10 months and diary free for about a month or so. So far, as you can see mixed results . My supplement regime is as follows : 600mg R - Alpha Lipoic Acid, 1000mg Acetyl- l- carnitine, 1000mg Omega 3 fish oil, 300mg Benfotiamine B1 , 2000mcg B12 methylcobalamine

Has anyone tried the Protocol 525?

Next steps : don't really know

I believe what you are going thru is a part of the neuropathy issue, some days better, some days harder...why, who knows, foods, and what we've done during the day etc but with the nerve damage and many with dead nerves, which I have, it's one day at a time.

And I've gotten into using a lot of various type topicals and this helps for me. Along with all my supplements and big sugar reduction, carbs too.... c