Have any of you had peripheral neuropathy prior to PD diagnosis?

[faridaro]

In 2013 I started experiencing "pins and needles" in my fingers and toes which were diagnosed as "idiopathic peripheral neuropathy" (I also suspect Raynaud's as I've been quite sensitive to cold). Three years later I developed a tremor along with cogwheel rigidity and was diagnosed with PD. During the past few months I developed stiffness in my lower legs and the neuropathy have gotten considerably worse - (there is also more stiffness in hands) which is worrisome. I wonder if it is a symptom of PD progression or something else. Would appreciate any input.

[Hidden]

Yes. Basically the same experience as you. My idiopathic PN dx was due to internal vibrations (which I now realise were the early manifestations of internal tremor). No real pain to speak of but it slowly came on and i suspect it is early dystonia. About 3y between the onset of that and much clearer PD symptoms.

As you surely know, there are other causes for PN (which you can rule out with testing to some degree). HIV, diabetes, other shit I can't remember right now. If you don't have any of those, your symptoms could well be PD related.

[faridaro in reply to Hidden]

It seems in my case the etiology of neuropathy is unknown that's why it was called "idiopathic", but forgot to mention that most probably I have Lyme which could be related to just about anything. Thanks for your input Chris!

[laglag]

My dad (he does not have PD )had something similar to IPN & went to several doctors for about 3 years found his neck was damaged. Surgeon preformed surgery last year on his 1,2 & I believe 3 and my dad is doing good. My dad was 86 when he had surgery, couldn't walk, write, or feed himself and now be he's planning on moving back to assisted living.

[faridaro in reply to laglag]

Very interesting - never thought of such cause for IPN - glad you dad is better - thanks for sharing!

[Kia17]

Do you take b6 ,b12 ,magnesium and vitamin D?If yes, how much? and type of these 4 supplements please?

[faridaro]

Yes, I take all of those:

B6 as pyridoxine hcl + pyridoxal 5' phosphate - 7.5mg,

B12 as methyl- and hydroxocobalamin (on alternate days) - 2500 and 2000 mcg respectively,

Mg as magnesium threonate (144mg from 2000mg Magtein), citrate 250mg and occasionally mag glycinate 120mg.

Vit. D 2000 -4000 IU as D3 drops (2000 IU each drop) in olive oil.

About 2.5 years ago I also experienced increasing neuropathy and had some labwork done which revealed my B6 levels were 3x normal reference range. I was told to discontinue B6 (which was a mix of pyridoxine hcl + pyridoxal 5' phosphate (25 mg) as part of B complex). When I stopped taking it the neuropathy decreased to the previous level.

My D3 results have been in range of 40 ng/ml during the past year.

Would appreciate your advice!

[Kia17 in reply to faridaro]

I guess your B12 intake is quite high.

B12 accumulates in the liver and based on my experience it takes 1-2 weeks after stop taking it to show the results (in my case pins and needles and stifness gone). I did that experiment a few times. But everyone is different.

Do you take Folinic Acid?

[faridaro in reply to Kia17]

Thank you Kia regarding B12 - I didn't realize you can get neuropathy from excessive B12 and will avoid it for a couple of weeks.

I don't take folinic acid although have a bottle of it as Calcium Folinate, however just realized it is past expiration date. Should I get some? My source of folate is L-5 methylfolate (in a multivitamin complex ) - also should add that I have heterozygous MTHFR variant and possibly have folate metabolism issues.

[maryalice]

I take magnesium threonate (from Magtein -100 mg) with food once a day, and I use the spray (-100%natural magnesium oil from essentially) at night and in the morning. I order them both from Amazon. The oil works very quickly and great for me. I know how painful it can be. I hope it works as well for you.

[faridaro]

Thank you Maryalice. I also take Magtein magnesium threonate, but may be need to try magnesium oil as you suggested, I know Art also highly recommends it for a variety of ailments.

Actually, I have a jar of magnesium chloride flakes (which turned into a rock from absorbed moisture) and probably could make my own mag oil if I manage to break that rock into chunks to get it out of the jar

[Kia17]

I have compound heterozygous MTHFR mutations which is worse than your snip.

I cannot take L-5 methylfolate since I am sensetive to it but take 800mcg of Folinic Acid Lozenges from Seeking Health every night before bedtime.Its almost similar to L-5 Methyl Folate for those sensetive to it and people with MTHFR snips can take it ( per Dr Ben Lynch advice).

On my experiments with different types of B12 and developing pins and needles,stifness, increased dystonia,I noticed that Folinic acid can help in reducing extra B12 and subside the stifness and pins and needles in shorter time.

Again these are my personal experience and individuals are different.

[ParlePark in reply to Kia17]

Thanks. Been trying the L-5 but homocysteine shot you to 21 from 10! Also using seeking health.

[faridaro in reply to Kia17]

Thank you Dr. Kia I am going to get Folinic acid lozenges from Seeking Health - love Dr. Lynch and his book Dirty Genes.

[Kia17 in reply to faridaro]

All the best Faridaro. I like his approach and supplements. If you have his book please revisit the chapter about Pulse Method for supplements.

[maryalice in reply to Kia17]

I think that would wok, but I think you have to use distilled water. Art was the one who recommend it to me. Hope it helps!

[faridaro in reply to maryalice]

Thank you Maryalice, I have distilled water and appreciate you pointing it out - little things can make a big difference!

[faridaro]

I will certainly revisit it as it's been a while since I read the book and don't even remember the pulse method - thanks for bringing it up!

[Kia17 in reply to faridaro]

How are you doing faridaro?

[faridaro in reply to Kia17]

Was feeling great yesterday - good mood, high energy, got so busy with housekeeping chores and cooking that didn't even pay much attention to neuropathy/PD stuff. Unfortunately today is a different story - low energy, anxiety, stiffness, numbness, sense of overwhelm and tremors. However managed to push myself out for an hour walk, had done some paperwork (which was piling up on my desk) to get a sense of accomplishment and had 30 min meditation to pull myself out of misery

Thanks for asking Kia, it's so uplifting to be part of this group with kind compassionate people like you - this is something truly to be grateful for!

[Kia17 in reply to faridaro]

I am really glad to hear you are doing well.

Diaphragmatic breathing can help in reducing anxiety. Please keep us posted.

[faridaro in reply to Kia17]

Thanks Kia for reminding about diaphragmic breathing, I know it helps to switch our nerves to parasympathetic mode - probably need to do it more often...

[Kia17 in reply to faridaro]

Like you said it’s really helpful.

[chartist]

faridaro,

If you have already gotten your B vitamins properly balanced, two others that are typically used for neuropathy are Alpha Lipoic Acid (ALA) and Acetyl L Carnitine (ALC).

naturalmedicinejournal.com/....

Here is a typical product where both are combined into one capsule :

vitacost.com/vitacost-alpha...

If it turns out to be helpful, it will be less expensive to by the 240 capsule bottle that also comes with free shipping :

vitacost.com/vitacost-alpha...

NAC and high quality fish oil may also be helpful.

Lastly, one of my favorites, melatonin, may be of use as outlined here :

practicalpainmanagement.com...

pubmed.ncbi.nlm.nih.gov/281...

ncbi.nlm.nih.gov/pmc/articl...

Art

[faridaro in reply to chartist]

Thank you so much Art for excellent advice and links!

Coincidentally, couple of weeks ago I came across this study "Management of the Aging Risk Factor for PD" which states: "The combination of alpha lipoic acid, acetyl-l-carnitine, coenzyme Q10, and melatonin supports energy metabolism via carbohydrate and fatty acid utilization, assists electron transport and adenosine triphosphate synthesis, counters oxidative and nitrosative stress, and raises defenses against protein misfolding, inflammatory stimuli, iron, and other endogenous or xenobiotic toxins." Full link :

pubmed.ncbi.nlm.nih.gov/242...

So, I ordered ALA and ALC right away and just started taking them a few days ago. Also have been taking melatonin for the past couple of months. Hope this combination will help with neuropathy and PD - killing two birds with one stone or should I say with 3 supplements

[chartist in reply to faridaro]

Faridaro,

Some people, but not all, have trouble taking the ALA + ALC late in the day as it tends to keep them awake, but taking it earlier in the day seems to resolve that issue for those who are sensitive to this combination and melatonin may also be useful to help offset this issue.

Art

[faridaro in reply to chartist]

Thank you Art for your kind advice - I started taking ALA and ALC couple of days ago with breakfast and after a week will probably increase to 2x/day - second time with lunch to avoid sleep issues as you suggested.

Definitely will be using melatonin - got a 100g bag of it from Bulk Supplements