Have you experienced an apparent episode of neuropathy and successfully fixed it?

For about 3 months I have experienced progressive leg neuropathy symptoms. I can barely feel my toes and it is bilateral. The numbness and tingling is sometimes mild and sometimes bad so bad it impairs my walking. Walking does not seem to help. Loosening footwear and elevating my legs helps. Massage helps. The masseuse suggested it may be secondary to Parkinson's tightening my muscles, reducing blood flow to my legs. She suggested rubbing Vicks on my legs to help relax the muscles and taking acetaminophen. :( The blood lab to evaluate for b12 deficiency found no abnormality. When I dose with my usual for PD (40mg EGCG, 250 mg C, salmon oil, 200 mg MP) it usually will get a little worse before it levels off as the MP kicks in. It all started during the awful health decline my wife went through before her MS finally took her life this past month, October 30. I hate MS and I have been distraught over the loss of the love of my life. My primary has me on Lisinopril to manage my b/p, which was never a health issue until this grieving. The medication was just started last week and is effective for my b/p but has not improved the apparent neuropathy. I wonder whether something like this has occurred to any of you and did you discover a fix?

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DearBuzz, I am so very very very sorry words cannot express it. Have not seen you posting in a while had no idea that that's the reason for it. You did a wonderful job, made her life happy and easier. Mary

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That's what she said all the time. My Joni was the best thing that ever happened in my life. We had a bond of love that was strengthened by our mutual illnesses. I'm benefiting from great support from both of our families now because they respect the effort that I made to help Joni all these years. There was a wonderful memorial service and so many people there spoke and lent support to us. I am posting again but pretty soon my posts will become briefer and not this rambling. I bought an iphone, it has a tiny keypad. I am cutting the internet provider to save money. My hand tremors. You get my drift.

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Dear Buzz,

My friend had similar problems with his feet and legs. His problem was caused by his spine. You might want to ask your Dr. to get a MRI of your spine. Don't wait as my friend waited too long and they weren't able to repair all of the damage.

I am so sorry to hear about the passing of your wife. You might be helped by a grief support group if you can find one in your community. Check with the social worker at your local hospital to find one. Also just going out to spend time with others and take your mind off of it might help. I'm not sure of your age but many people are also helped by going to senior centers or church groups where they can talk to other people and participate in group activities.

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Hi. I'm so sorry about the loss of your wife. I know you stood by her the whole way and I know it had to be tough when you're battling PD yourself. Take care. My thoughts & prayers are with you.

I have not had neuropathy symptoms, but my neuro always asks me if I have any tingling in my legs. I never asked why, I just assumed it was a side effect of one of the meds (C/L, Amantadine, Azilect).

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I wouldn't be surprised if it turns out to be a side-effect of a drug combo. During my last few months of stress after struggling to maintain symptom control following an immunization shot, I began to combine C/L with MP at night to help me sleep.

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Very, very sorry to hear about your wife. I had no idea.

For odd symptoms such as the neuropathy is very good idea to investigate possible adverse medication effects. Here is one site that is useful: askapatient.com/

Or just google neuropathy and each med you have taken. This came up for pneumovax: factmed.com/study-PNEUMOVAX... so that may have been the cause.

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Thank you for the factmed link, I forwarded to my primary physician. The start of it might have been my getting the Pneumovax immunization earlier this year. I hope there is a remedy.

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Regardless of what your B12 levels are you should take B12/methylcobalamin plus R-alpha lipoic acid as therapy for peripheral neuropathy.

First, the following study chronicles the safety of high dose B12 in various diseases. Doctors recommend 1 mg/day and in cases of cyanide poisoning, patients have received 10,000 mg = 10 grams of hydroxocobalamin (in a 2 hour period) to save their life. 10,000 mg is ten thousand times the daily dose recommended by your doctor.

B12 safety paper:

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Secondly, methylcobalamin has pain killing ability in the human body:

Methylcobalamin: A Potential Vitamin of Pain Killer

"Recently, MeCbl has been demonstrated to have potential analgesic effects on neuropathic pain in experimental and clinical studies."

hindawi.com/journals/np/201...

I have taken 5 mg/day of methylcobalamin for at least 5 years with no side effects and I am sure by B12 levels are fine if not high.

R-alpha lipoic acid is the natural form of lipoic acid and many products are cut with S-lipoic acid - the synthetic form, so they are not as potent as 'R'.

Meta-analysis of methylcobalamin alone and in combination with lipoic acid in patients with diabetic peripheral neuropathy.

CONCLUSIONS:

The results of the meta-analysis show that treatment with LA-MC for 2-4 weeks is associated with better outcomes in NCV and neuropathic symptoms relative to MC treatment. However larger well-designed studies are required to confirm this conclusion.

ncbi.nlm.nih.gov/pubmed/236...

600 mg/day of R-alpha lipoic acid is standard (in studies higher doses have been used) and it should be taken on an empty stomach between meals.

livestrong.com/article/4268...

Finally, lipoic acid effects thiamine levels so thiamine should be also taken when taking R-ALA:

"Animal studies suggest that people who don't get enough thiamine (vitamin B1) should not take alpha-lipoic acid."

umm.edu/health/medical/altm...

Best wishes.

Rich

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Thank you Rich. As always you have been a good friend, kind and generous with recommendations. After the lab drew my blood for the b12 and thyroid panel tests I started taking 1500 mcg a day with just a little energy and no apparent reduction of neuropathy or downside. When I got word yesterday that my b12 was normal and my thyroid panel was normal I decided not to take anymore high doses of b12. The b12 I was taking is not the form you recommend anyway. So, I will search for some and try it out to see if I feel a benefit. ALA is a component of a lot of foods that I normally enjoy but i will supplement with a 600 mg cap. Thanks for always being helpful.

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Geez that R-ALA is expensive! I am ordering just enough for a 10 day trial. :)

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I'm interested to read your post as I have had these symptoms for almost a year. My GP diagnosed a pinched nerve. I sought help from a chiropractor which was useful but the symptoms are still evident. My neurologist has booked a scan for me later this month looking for arthritis in my back. Blood circulation in my legs is bad. Thank you for enlightening me on this. Best wishes.

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Buzz, so very sorry to read about your wife. You were. clearly a very caring and loving husband to her and loosing her must be so very hard and leave a big gap in your life.

Your symptoms are not to be ignored and mine have never been that bad, but i have had tingling and numbness mostly in my hands. It comes back sometimes but mostly it has gone. I think mine is due to slight oedema which some pills can cause. Diuretics are sometimes used for hypertension and they might help.. you could discuss with your doctor. I think different timing of my meds helped, eg not pd meds immediately before bed but Im not really sure.

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Here is another possible treatment for neuropathy: Nicotinamide riboside - NADr

Nicotinamide riboside (vitamin B3) prevents nerve pain caused by cancer drugs

sciencedaily.com/releases/2...

Sure it is cancer drugs causing neuropathy but niacin/nicotinamide/nicotinamide adenine dinucleotide riboside/NADH have a long history with PD and even low doses (250 mg/day) of niacin have been shown to be good for PwP.

Low-dose niacin supplementation modulates GPR109A, niacin index and ameliorates Parkinson’s disease symptoms without side effects

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

[Protective effect of nicotinamide in a mouse Parkinson's disease model].

ncbi.nlm.nih.gov/pubmed/224...

Parkinson's disease and NADH Treatments

nadh.com/pages/parkinsons

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Sorry about your recent loss.

My feet went numb before my PD symptoms started to appear. I'm not sure if it's connected to PD or not.

I had nerve conduction tests and 'idiopathetic neuropathy' was diagnosed. But umpteen blood tests later I'm no wiser about how to get rid if it.

Difficult to be sure that shoes fit properly. I go without shoes as much as possible to relieve PD crampy feet.

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So sorry to hear about your wife. It must be very tough for you and the stress won't be helping your symptoms.

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The stress yes is suspicious as the cause of it all. Thank you. Stress was the first thing I tried to address after Joni passed. But that goes on and probably will for years. I was talking to a friend that lost his wife and he said it was 5 years before he could take her clothes out of the drawers and closet. I tried massage twice and it didn't relieve the neuropathy symptoms. I was just relieved of some cash that I wish I had back. :) My spine is fine. I really think this was caused by Merck's pneumovax 23 booster that a Medicare health maintenance system prompted my primary to remind and urge me to get. The primary said it had been over 10 years and i needed the booster and it was the last one I would get for the rest of my life. How ironic a shot meant to defend my lungs from a deadly pneumonia rocks my nervous system and leaves me numb.

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CBD oil made my bilateral neuropathy go away. So sorry about your wife

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Buzz

Sincere condolences following the loss of your wife. Words can never adequately express how sad and heartbreaking this news is.

All the best for your health.

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Dear Buzz

Are they cramping also?

I have had this happen to me but was not associated with my PD, I have spine issues. My hands are frozen when I drive, meaning cold-no circulation.

Feet as well, when I sleep or cycling...

Gabapentin 600mgs.

Ask and see if this can help.

:) Eva

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Eva, my wife's gabapentin here in the med cabinet has actually helped me to sleep. Last night was my first time to take any gabapentin. I tried 300 mg at bedtime along with a small amount of Tylenol. I occasionally get a minor leg cramp in a calf. When I awoke today my toes are still numb and everything. But, YAY! I slept so much better.

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I have terrible neuropathy in both feet, toes and legs. I have tried everything and nothing seems to work. If you can take Gabapentin I know that it has worked for many people. Capsasin HP also helps with the pain and numbness. The best thing that works best for me is Tommy Copper socks: CopperFit™ Socks provide performance and breathability for ultimate comfort and protection against sweat and foot odor. They have a reinforced heel and toe, soothing arch compression and a copper-infused cushioned foot bed for the ultimate in durability and comfort. Heel tab prevents slipping inside the shoe. S/M (Men's 5-9, Women's 6-10), LG (Men's 9-12, Women's 10-13). Machine wash and dry. Imported. 3 pairs. I but them on line at feelgoodstore.com. You can also get Incrediwear sock. Both have change my life. They feel great and and the pain and tingling are reduced. I never want to take them off! Good luck to you!

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Thank you I have an uncle who is also recommended special socks he has diabetic neuropathy I appreciate your advice have a good day

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Well I/O the maker of Pneumovax 23 an apology . My neurologist says I do not have peripheral neuropathy I had a stroke. Meanwhile the B12 and the Alpha lipoic acid has been helping me .

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