Neuropathy with PD: Has anyone had... - Cure Parkinson's

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Neuropathy with PD

cjCardio53 profile image
21 Replies

Has anyone had "neuropathy," in hands/legs? Over the last few weeks I have noticed numbness and tingling. Here we go....another "thing" to deal with. Good ol' PD.

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cjCardio53 profile image
cjCardio53
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21 Replies
Ethin profile image
Ethin

healthunlocked.com/cure-par...

cjCardio53 profile image
cjCardio53 in reply to Ethin

Thank you.

park_bear profile image
park_bear

Are you taking levodopa medication? if so consider B6 deficiency:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

cjCardio53 profile image
cjCardio53 in reply to park_bear

Thank you.

Gymsack profile image
Gymsack

I believe I have both PN and PD . For a long time. I listened to people tell me that there is no pain with PD and they are wrong. BUT is the PN associated with the PD or are they two separate things. My brother had PN and ALzheimer's . It seems like it is all one but truly we are not at that point yet, we do not know. You will get used to that answer ,I suspect.

My brother lay on his sofa sweating , no matter the temperature due to pain. He wa prescribed some heavy duty pain killers and slept most of the day and night.

Then the insurance company that had a long term health policy with his employer lost their court case and started helping him . It was determined that he also had Diabetes and his wife jumped in and looked after that with very strict diet and exercise. He lost a lot of weight.

Treating the Diabetes, we believe started improvements in the PN , although the several years he had suffered took a toll. Then he was diagnosed that he had Alzheimer's and everyones life became complicated and we do not know what started what or was associated but generally we feel it was all related.

He passed at Christmas due to a head injury during a fall

My situation is some what similar.

When I have missed taking a dose of Leva dopa or there is a delay kicking in all the PN symptims rise to the top and conversly when properly PD medicated PN become bearable and disappear.

Doctors tell me this is not possible and there is no link. I have given up caring what they think or what is written in their text books.

No. not bitter just tired

Be Happy

cjCardio53 profile image
cjCardio53 in reply to Gymsack

Thank you for the insight.

chartist profile image
chartist in reply to Gymsack

Jim,

I think you are correct about PD, PN, diabetes and insulin resistance being related.

1. Both PD and diabetes have insulin resistance as a common factor.

2. PD, insulin resistance and diabetes are noted for increased risk of peripheral neuropathy.

3. People with diabetes are at increased risk for PD and PN.

4. Insulin resistance is thought to increase PD progression as well as worsen diabetes.

5. Insulin resistance is often seen prior to developing diabetes.

Because of this interplay, I wrote the following about reducing insulin resistance :

healthunlocked.com/cure-par...

Because PD and Diabetes have an increased risk for peripheral neuropathy, I wrote about 6 supplements that can help :

healthunlocked.com/cure-par...

Notably some of these supplements have also shown benefit for PD, diabetes and dementia.

Altering the gut microbiome toward less pathogenic bacteria helps all four diseases as well as many other diseases.

Art

chartist profile image
chartist

Regarding PN, the following may be of interest to you :

healthunlocked.com/cure-par...

Art

cjCardio53 profile image
cjCardio53 in reply to chartist

Great..thank you.

chartist profile image
chartist in reply to cjCardio53

You're welcome!

Art

jimcaster profile image
jimcaster

My chiropractor recommended that I take this product with high levels of vitamins B6 and B12, among others. I take three pills every morning. If I get neuropathy I take a couple more and it works wonders.

Photo of supplement bottle.
cjCardio53 profile image
cjCardio53 in reply to jimcaster

Thank you, will try....

MarionP profile image
MarionP in reply to cjCardio53

B12 deficiency definitely can be a bottleneck. You might do best absorbing the methylated version of B12, usually called methycobalamin, look for the "meth" or "methyl" prefix.

RonB1 profile image
RonB1 in reply to jimcaster

Do you have PD? Does this supplement interfere with C/L?

cjCardio53 profile image
cjCardio53 in reply to RonB1

Yes, dx'd at 40..now 53y/o.

jimcaster profile image
jimcaster in reply to RonB1

I was diagnosed with PD in 2018. I take this supplement first thing in the morning and don't take my first dose of Carbidopa Levodopa until an hour or two later.

RonB1 profile image
RonB1 in reply to jimcaster

Thanks!

jimcaster profile image
jimcaster

Here are the specific ingredients. I pay $40 per bottle to my chiropractor, which is cheaper than I can get it elsewhere.

Ingredients label
Ctime profile image
Ctime

It seems that the linkage between neuropathy and PD is real and well documented but not well understood. (if you want to get in the weeds, a journal article is here ncbi.nlm.nih.gov/pmc/articl...

I was a lab rat for the CNS Synuclein One study. (cndlifesciences.com/syn-one... This is a less reported test that detects phosphorylated alpha synuclein as a near definitive biomarker for Parkinson's disease. It is similar to the widely reported on MJFF supported test that samples spinal fluid. The Syn-one runs its test on skin biopsies.

As Syn-One is now a commercial product that a neurologist can order, and the paper that backs up the product has been submitted for publication, they actually sent us our results. Us is my wife and I as she volunteered to be part of the control group.

My results showed alpha synuclein in one sample ("proof" of PD) but it also showed biological evidence of low levels of neuropathy ( Small Fiber Sensory Neuropathy, SFSN, ) in all samples. I met with my neurologist a few days ago and went over this report. He was totally unsurprised and made some comment that it actually could be a byproduct of Levodopa therapy or could be tied to the PD.

I am already on B vitamin therapy as my primary care physician had tested me for this. Luckily I do not have any dramatic symptoms of neuropathy although I can now add that to the diagnostic list.

Onward!

cjCardio53 profile image
cjCardio53 in reply to Ctime

Interesting...thanks for the info.

Esperanto profile image
Esperanto

Because I don't see it specifically mentioned here, in addition to a deficiency of B6, I also warn against an overdose. Also through your vitamin B complex and multivitamins. With the supplements it is difficult to find a balance in this. I experience that myself with deterioration of my PN (With negative impact on the PD) and test my blood every 3 months for the time being until I have found the ideal dose of B6 (P5P) for myself. It will be different for everyone. However, this will occasionally need to be corrected if your Carbidopa dosage changes. So also as Jim mentioned, do not take C/L medication simultaneously with your B6, but with an interval of at least 1.5 hours.

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