Severe Peripheral Neuropathy

Posted by jms1954 @jms1954, Jan 29 10:10am

I have been diagnosed with Severe Peripheral Neuropathy in both feet, ankles and lower legs below the knees. I am scheduled to have a partial knee replacement removed and a total knee replacement put in its place. The partial was done 15 years ago, and the new knee is scheduled for March 9th. Should I be concerned about further nerve damage from the surgery? My surgeons N.P. says its a routine surgery even with the neuropathy, I find that a little hard to believe so I'm reaching out for suggestions and others experiences.

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Profile picture for blowerk1216 @blowerk1216

@footpain I have peripheral neuropathy in my feet this is what I’m trying:
Current plan
Vitamin B12 (methylcobalamin) 1000 mcg
. Benfotiamine 200 mg
• Alpha Lipoic Acid 600 mg
• Acetyl-L-Carnitine 100 mcg
. Magnesium Glycinate 25 mg
. Vitamin B6 4 mg
. L- Arginine 25 mg
. Magnesium Glycinate 400 mg

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@blowerk1216
Hi and thanks for that recipe.
Do U have idiopathic PN?
I've tried bits of what you mention but not the full combi.
A doc from Florida has his recommended formula for Benfotiamine and I used the bottle as directed but I really couldn't detect any reduction of burning and needles or numbness. I assume your formula is working for u which may be due to deficiency of one or more of those. Wish there was a magic pill for this. My sister keeps pushing Med Beds but no access to them yet.
Best to you and don't give up!

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Profile picture for blowerk1216 @blowerk1216

@footpain I have peripheral neuropathy in my feet this is what I’m trying:
Current plan
Vitamin B12 (methylcobalamin) 1000 mcg
. Benfotiamine 200 mg
• Alpha Lipoic Acid 600 mg
• Acetyl-L-Carnitine 100 mcg
. Magnesium Glycinate 25 mg
. Vitamin B6 4 mg
. L- Arginine 25 mg
. Magnesium Glycinate 400 mg

Jump to this post

@blowerk1216 who else is using this kind of supplement cocktails?

REPLY
Profile picture for blowerk1216 @blowerk1216

@footpain I have peripheral neuropathy in my feet this is what I’m trying:
Current plan
Vitamin B12 (methylcobalamin) 1000 mcg
. Benfotiamine 200 mg
• Alpha Lipoic Acid 600 mg
• Acetyl-L-Carnitine 100 mcg
. Magnesium Glycinate 25 mg
. Vitamin B6 4 mg
. L- Arginine 25 mg
. Magnesium Glycinate 400 mg

Jump to this post

@blowerk1216 Be careful re the B6; it’s toxic in amounts over the daily limit. 4 mg is way over the limit of 1.4 mg per day!

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Profile picture for carol1024 @carol1024

@crowhunter I would be checking the nerves in your back. I do have neuropathy in feet because of chemo, it subsides before next treatment, but the numbness in my thighs comes from nerves in my back being compressed. I have sciatica right now and wearing back brace. The thigh numbness has gotten worse over the last 6 months and happens if I stand too long in one place or sit with my back arched a certain way. Have you had medical imaging done of your back?

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@carol1024
Hi Carol,
I had a nerve compression lumbar surgery and now my nerve pain is worse. The surgeons are now recommending a 12 hour front and back two day surgery to alleviate the nerve pain. I am not sure about this and have done nothing. I have had 3 consults with each surgeon saying the same thing. Don't know which is worse, and am struggling with what to do

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Profile picture for sue4 @sue4

@blowerk1216 Be careful re the B6; it’s toxic in amounts over the daily limit. 4 mg is way over the limit of 1.4 mg per day!

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@sue4 agreed thanks

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Profile picture for footpain @footpain

@blowerk1216
Hi and thanks for that recipe.
Do U have idiopathic PN?
I've tried bits of what you mention but not the full combi.
A doc from Florida has his recommended formula for Benfotiamine and I used the bottle as directed but I really couldn't detect any reduction of burning and needles or numbness. I assume your formula is working for u which may be due to deficiency of one or more of those. Wish there was a magic pill for this. My sister keeps pushing Med Beds but no access to them yet.
Best to you and don't give up!

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@footpain it’s early days on this protocol but I’m seeing a small amount of improvement.

REPLY
Profile picture for susiesmith @susiesmith

@carol1024
Hi Carol,
I had a nerve compression lumbar surgery and now my nerve pain is worse. The surgeons are now recommending a 12 hour front and back two day surgery to alleviate the nerve pain. I am not sure about this and have done nothing. I have had 3 consults with each surgeon saying the same thing. Don't know which is worse, and am struggling with what to do

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@susiesmith wow I am so so sorry for you. I'm very surprised that, with the new advances in the surgical field, that back surgery seems to have gotten left in the dust. If they can do a hysterectomy with the assistance of a robot and leave 5 tiny little scars on the abdomen, and almost pain free I swear it's THE EASIEST thing I've ever had done, then it looks like they could do the same with back surgery. As with heart caths, if they have a screen where you can see where to go then it seems awfully simple to get all the images you need so you'll know exactly where to go, make that tiny incision in the back where the problem is and either get the nerve that's being crushed out of the way, and even plug where it keeps getting caught, or re-route the nerve. It just has to be easier than a marathon wide open back surgery. I'm 67 years old and I pray I can make it without any type back surgery. It's almost like the lottery though thinking about at what point will you become incapacitated. Mine is most troublesome while standing or walking long distances. I can always sit but it's sad that I can't stand to cook Thanksgiving or Christmas dinner like I used to. No wonder grandma always sat to peel those potatoes or mix a casserole. The body is such a complex machine to begin with. I hope you find relief and a solution you can live with. It's something that needs to be thought about very carefully and I will pray that you get peace with your decision. Please keep us updated if you can. Best wishes. ❤️🙏🏻

REPLY
Profile picture for blowerk1216 @blowerk1216

@footpain I have peripheral neuropathy in my feet this is what I’m trying:
Current plan
Vitamin B12 (methylcobalamin) 1000 mcg
. Benfotiamine 200 mg
• Alpha Lipoic Acid 600 mg
• Acetyl-L-Carnitine 100 mcg
. Magnesium Glycinate 25 mg
. Vitamin B6 4 mg
. L- Arginine 25 mg
. Magnesium Glycinate 400 mg

Jump to this post

@blowerk1216 so much of that says may interfere with chemotherapy I have to be careful what I take. I take the Alpha lipoic acid...the R kind, the magnesium, the B vitamin, I've just started taking D to see if it will help with this bone pain from chemo. I also have Liposomal Glutathione, vitamin K, A but I have to talk to oncologist first. Keep in mind too I was researching things that a cancer patient could take.

REPLY
Profile picture for carol1024 @carol1024

@blowerk1216 so much of that says may interfere with chemotherapy I have to be careful what I take. I take the Alpha lipoic acid...the R kind, the magnesium, the B vitamin, I've just started taking D to see if it will help with this bone pain from chemo. I also have Liposomal Glutathione, vitamin K, A but I have to talk to oncologist first. Keep in mind too I was researching things that a cancer patient could take.

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@carol1024 are you taking methylated B12?

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Profile picture for blowerk1216 @blowerk1216

@carol1024 are you taking methylated B12?

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@blowerk1216 I'm taking blood pressure, thyroid meds and omeprazole. Contraindicated

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