***Numb Ankles***: Good morning... - Advanced Prostate...

Advanced Prostate Cancer

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***Numb Ankles***

leo2634 profile image
16 Replies

Good morning Brothers recently my ankles have been developing numbness and tingling. I know it's probably Neoupopthy or a form of it most likely from ADT for five years now. I'm sure some of you are experiencing this new twist to our APC . I take an over the counter supplement that's specifically for Neoupopthy already. Any help or advice from my brothers is appreciated. Never give up, never surrender. Leo

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leo2634
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16 Replies
tango65 profile image
tango65

Consider consulting with a neuroligist. Diabetes, prediabetes and chemo may be associated with peripheral neuropathy. Gabapentin and pregabalin help in controlling the paresthesias.

BerkshireBear profile image
BerkshireBear in reply totango65

I echo the suggestion to consult a neurologist, but not just any neurologist. I have had peripheral neuropathy for close to 30 years affecting my lower legs and feet. Whenever I asked local neurologists and doctors (even in a nearby teaching hospital) the answer has always been "gabapentin" to treat symptoms, and there's nothing that can be done to cure it. I found that hard to accept considering how prevalent it is; there must be research going on somewhere.

I started researching the med literature and found papers outlining protocols which find that in roughly 50% of the cases it is possible to find a cause and in many of them treat the cause to control or halt progression. This is new stuff that hasn't trickled down to the local docs yet. I identified three places where such research is going on, there may be more I didn't look further: Boston Medical Center, Mayo Clinic, Cleveland Clinic. The protocol is a very thorough work up including MRIs, EMGs, and an extensive life history looking for potential past exposures. I am not finished with my study yet, but the major finding so far is that all doctors so far had misidentified the basic kind of neuropathy; also, most of the historic trigger suspects are being ruled out. Even if the cause remains "ideopathic" we will have solid information on which to base future treatments and studies.

Some neuropathies are temporary and do self-reverse and may heal with time, but anything that destroys nerve tissue rarely resolves. Best to stop it before too much damage is done.

Start here: Semin Neurol. 2019;39(5):531-541.

Https://medscape.com/viewarticle/92...

cesanon profile image
cesanon in reply toBerkshireBear

Berkshire, can you tell me more about gabapentin?

BerkshireBear profile image
BerkshireBear in reply tocesanon

Nothing more than you can read on line. The issue is that most folks with PN are looking for a cure, or at least reversal -- rarely achieved. It is the nature of PN to be the product of other forces which destroy nerve tissue. Even if the destructive process is stopped, regrowth (regeneration) of the destroyed nerve tissue is between rare and impossible. The symptoms of PN are commonly inconsistent, among individuals, and with time, with age, with environmental and other health conditions within individuals. The drugs used (including gabapentin, alpha-lipoic acid, etc.) work to mask or alleviate the annoying symptoms. Gabapentin is apparently quite safe although no drug is entirely free of occasional side effects. The doctor who Rx it for me suggested that I should stick to minimal doses (I don't recall her reasons). After several years I felt it was doing no good; another doctor suggested trial switching to alpha-lipoic acid (OTC). For me it is effective in moderating the swings of hurtful symptoms ... making PN easier to live with. That's a win for me. BUT...

It's really all about you and what works for you. A doctor may have suggestions, or favorites, deep experience, or may just be dealing with what was taught in med school 20 years ago. And your body might not react the way the doctor expects. Read up on any drug which you are given. The evaluation is your responsibility.

tango65 profile image
tango65 in reply toBerkshireBear

How much Gabapentin are you taking?

leo2634 profile image
leo2634 in reply totango65

None

tango65 profile image
tango65 in reply toBerkshireBear

i agree. You describe what it should be done by any neurologist.

I had similar studies, plus biopsy, very detailed immunological work out looking for antibodies which could affect the small fibers, etc. etc.

The most common "causes" or association of peripheral neuropathies are diabetes, pre-diabetes and chemotherapy. but they have to rule out other causes and do a correct classification of the neuropathy.

BerkshireBear profile image
BerkshireBear in reply totango65

I agree with "all", but the very existence and effectiveness of support groups like this one is evidence that the trickle-down of knowledge and wisdom in the medical field is slightly less than our ideals.

SteveTheJ profile image
SteveTheJ in reply toBerkshireBear

I took gabapentin for a number of years and noticed no improvements. But my issues were very mild.

Kaliber profile image
Kaliber

yes I have the same thing… from mid calf down to toe tips. It gets worse over time. Like you said , a combination of adt drugs and diabetes.

Massage helps a bit , for a while … and hp jets in my jacuzzi helps some too. but actually nothing I’m doing seems to help much. My pcp thinks its probably permanent .

❤️❤️❤️

jtspitfire profile image
jtspitfire

May I ask what the supplement is and is it helping?? Thanks.

leo2634 profile image
leo2634 in reply tojtspitfire

Neuropaway.

cesanon profile image
cesanon

Try making sure you have enough B1, B12 and lipoic acid. Probably best sourced from LEF.org.

You can buy their supplements either direct from them or on Amazon.

It's not going to cure you, but might moderate some of its effects.

mjtct61 profile image
mjtct61 in reply tocesanon

R Alpha Lipoic Acid may help

cesces profile image
cesces in reply tomjtct61

It's hard to tell with these things, but I think it's helped me.

j-o-h-n profile image
j-o-h-n

Have someone massage your feet with Vaseline and wear socks to bed...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 02/13/2023 10:29 PM EST

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