I am SOOOO glad I found this website.
I had all of the tests.... peripheral neuropathy.
Maxed out on Lyrica, Gabapentin, and 1 to 2 Vicodin to go to bed at night.
If I'm on my feet a lot working on a Saturday around the house, it will be one vicodin every 4 -5 hours.
I'm excited to read all of the information.
Thanks to everyone in advance.

I had labs done for B 12 and they were high. Probably because I was taking a supplement then.
I'm still going to try to cut back on the gluten stuff.

That's a great idea. I'm convinced, especially by reading Davis' book, that wheat is a poison on many levels. It may not cause a particular problem, but it often prevents solving it. Everyone is healthier without it.

My doctor say's I have severe peripheral nueropathy, it buzzes like crazy, i am on gabapentin, but it just seems like i am the electric man, feet spliting and all, can't handle it too much longer, nothing is working, I walk like a person with palsy and can't help it. Wow!

Looking for stickies..
 

New to group. Looking for "stickies". Anyone?
No dx but I know I have neuropathy. Let tingling chronic and constant..
Weakness..... Tried gabapentin. Almost killed me!!!!
I want this electricity to stop!

Welcome to NeuroTalk:

You are posting this first post in one of the stickies.

Here is the link to the main PN board. The stickies are at the top of the list.

http://neurotalk.psychcentral.com/forum20.html

new here.
 

Where is page 2 of the "stickies?"

These are the 2 parts of Wing42's posts.

http://neurotalk.psychcentral.com/post9580-18.html
http://neurotalk.psychcentral.com/post9583-19.html

Keep in mind that his suggestions are what worked for HIM.
People vary, and may or may not find all of his suggestions useful.

Thank you MrsD
 

For the wisdom in your words I am grateful. Everyone who comes to these pages needs to realize the posters are sharing personal experience and incapable of dispensing medical advice sight unseen to anyone. We all take the thoughts expressed more or less as kitchen table advice, more valuable in the caring which is dispensed than probably anything else.

So very grateful for these pages,
Mark56:grouphug:

PN in AGONY
 

I live in hk and had weird symptoms for some weeks! i will write them in order down here!

1- Caught a terrible flu on july 21st to the extent where i was bed ridden with terrible shakes in my inside and sweating ridiculously, as i was in mexico i did not see a doctor but just bought some over the counter anti biotics which i took for a few days and symptoms were relived!

2- did a hair transplant on 24th of july in minnesota, then flew back to hk the following day!

3- had some swelling and pain (due to the hair transplant) and also some numbness and tingling on the top of my ear which i put down to the hair transplant as they removed hair from the sides of my head.

4- i started the very low calorie and carb diet called medifast (which i have done many times before) as soon as i got back! I was still on pain killers for the head swelling for a few days as well!

5- during this diet from july29th to august 6th, i felt terrible coldness, and an inability to keep warm, (something i had never felt before on this diet), it was the middle of summer in hk 33 degrees but i was walking around in a sweater and coat!

6- on the 6t of August i came of the diet and tried to eat as normal and try to reverse this terrible chill! Days went by but there was only mild improvement!

7- 11th of august i went to the GP for a blood test, hiv, renal, lungs diabetes, thyroid all came back normal. So the doc said im in good health!

8- from 11th to the 19th of august i still felt cold but also had burning hot and unusual sensations in my abdomen but not specific to one area, but all around. I went to hospital they checked me with xray, urine sample, the ultra sound. Everything came back normal again.

9- 20th of august whilst on the computer i got sudden pains in both arms and legs from the knee down and elbow down! Never felt anything like it! It lasted for hours as if there was noblood going to the area and stabbing pains! I went to the doc again and he gave me some medicine to relax me as he siad i was uptight!

10- after that i had an odd sensation in a couple of my toes on the right foot, feeling numb, and also cramping in my left calf when walking! Also odd sensations in my arms and hands like a sudden cold feeling and then hot! Throughout all this i felt so tired weak and exhausted! This feeling got stronger as the day went on, i dont usually drink alcohol but the only thing that gave me some mild relief was a glass of wine around 5pm and drinking it slowly over the evening, this also helped me slep.

11- On the 1st of September these pains came back, and also terible fatigue so i went to hospital, they suspected Guillian Barre syndrome, they did the nerve conduction test which was normal so they ruled that out. The neurologist gave me one xanax 75mg and one lyrica to take per day and said he would keep me in for a week for observation. He said it was probably something or nothing and sometimes these things cant be explained sometimes. He ran some tests on my heart, mri and mra and all came back normal. He also did some blood tests, b12 was 1002, he said it was high but nothing to worry about, glucose fasting level was 3.9 and thyroid, heavy metals, ANA was all normal.

12- On the 5th of august these awful pains came back but this time it was in my legs up to my thighs, and in my arms up to my shoulders and was the most awful pain! The docs could not understand it, they all put it down to hyperventilation or anxiety. So they gave me an extra dose of Lyrica and xanax a day, and told me the were going to treat me for anxiety. I mentioned the notion of me having some form of PN to which the neurologist replied, that my tests came back normal and he has never seen a case of PN in his thirty years of practice so he told me he would be treating me for anxiety! Yes i think i have anxiety, but i think its from this condition not causing it!

13- On the 12th of september, they let me out of hospital and i went back to work. I work as a dancing teachers so my legs and arms are so important to me! I seemed to do ok as i only had a few lessons that day, but in the evening the terrible burning sensation in my feet was unbearable, i just have never experienced anything like it! The next day i booked appointments with the top 3 neurologists here, 2 sai i had anxiety, and one said it could be some form of PN but noone in hk specialises in this nor do they know anything bout it!

Since the my syptoms seem to have got worse, no longer do they come in the attack form, nut now my feet are so so tender and get so hot after trying to dance! Walking on them is like walking on broken glass! Then my hands seemed to get sensitive to holding objects with corners or slightly sharp, it would give me pain! Also my skin almost all over my body is super sensitive even wearing my shirt and tie! Im in a mess, i cant work, im aggrivated and no fun to be around, im depressed and all the docs tell me im imaginig all this! I am in the process of trying to get an appointment in the mayo clinic in Rochester as i heard this is the leading clinic for PN disorders. I want someone to tell me if i have tihis terrrible thing or not! And let me know if i am going out of my mind!

Im only 32 and dancing is my only education and my only skill, so its the only way i can make a living! Please help! Does this PN come on so quickly like this? Can i stop this pain in my feet so i can work! Im so desperate! Please help, anyone out there that can give me some tips, advice or make any sense out of this, i would be eternally grateful to!

kind regards

Toddy

A few things--
 

Given you said you had a bad infection ("terrible flu", though antibiotics won't help with true influenza, which is viral), the possibility of a post-infectious molecular mimicry autoimmune attack on the nerves should be considered. Certainly, Guillain Barre is suspected to arise from this mechanism, as are certain other acute-onset neuropathies:

http://neuromuscular.wustl.edu/time/...htm#neuropathy


The above page comes from the Washington University at St. Louis Neuromuscular web site, which is an excellent database of neurological conditions.


And, just in my experience, most neurologists who do not specialize in neuropathy might have little idea how to test for such conditions. Going to Mayo is a suggestion, but in my opinion, Johns Hopkins in Baltimore, Cornell-Weill/Columbia in New York, or The Jack Miller Center in Chicago might be better bets, if travel and money is not a concern. All of these centers are major research facilities for neuropathies, have done much of the work in identifying their complexities, and may be better at getting to a diagnosis.

Welcome to NeuroTalk, Toddy.

What antibiotics did you take? Did you get stomach flu too?
Mexico and diarrhea are common links.

Some antibiotics cause PN in some people.

Anti Mag
 

I was first diagnosed with CIDP and was getting IVIGG for treatment. Then my doctor changed the Diagnosis to Anti Mag with my insurance will not pay for IVIGG treatments. The treatments were helping but now I am not getting any kind of treatment. I do take a vitamin 12B shot once a week. Is that anything I can do to help at this point?

I would talk to your doctor, explain how the IVIG was helping and get him to resubmit with a dual diagnosis, or go back to the other.
Without the proper diagnosis code, you are stuck.

Sfn
 

LIZAJANE Where are these stickies you speak of? Really interested in your self Tx. I was Dx in 2010 with skin biopsy, with small fiber Neuropathy, but the Neurologist reallyt didn't talk about it "I just had it" She failed to explain. The symptoms started on my thighs (which is unusual), and is now raising havic to my calves/feet. I just went to my VA doc, another knowledgable, arrogant, piece of work . Asking questions about my symptoms, and possiblity of having MS (symptoms are simuilar); "NO - YOU HAVE PERIPHERAL NEURITIS - YOU DO NOT HAVE MS!" Ok Doc, you made your point - So what else do I need to know, or expect, or manage it? [Nothing replied- just disturbed over the fact that I was concerned over having MS. I'm always reading material on specific Dx's, and unfortunatley, I see too many similarities with what I'm experiencing - I see no problem asking a doc about possibilities. She didn't have to have a cow. I felt I was waisting her time with my concerns. So much for the VA. Some Docs just don't have bedside manners. By the way, did you experience fasiciulations at all - mine are in my calves - feels like worms moving around - looks like it too , the muscles just quiver relentlessly. Anyhow, I would like to know more about your self healing - stickies. How do I get to them? JW

The stickies are on the main index....there are 3 of them now.
This thread is one of the three.

LizaJane may have her own mixture of supplements that worked for HER on this thread somewhere in the beginning. You'll have to read it to find them. Everyone is different... some things work for some people and not others. A lot depends on your trigger and cause. That is why we ask so many questions, about your lifestyle, when you started with PN symptoms.

Hereditary issues are always possible too. CMT (Charcot Marie Tooth) is the collective name for those. If you have THAT there are no supplements really shown to improve that type, as yet.

^^I've started taking half my daily dose of magnesium, potassium and benfotiamine at night. I know, I should have done this long ago. We'll see if it helps my foot and leg cramps. I am also taking the smallest possible dose (of everything), and cutting back whenever I can. I'll play (up or down) with that, too.

My PN pain was absolute hell just over 3 months ago with severe stabbing pains in my toes and fingers and burning and insane cramping that made me want to seriously kill myself. It was also the cause of a few full nervous breakdowns. This is spurred on by my Internet research from so many places that claim PN is permanent, when clearly this is NOT true, since there are success stories.

But now after nearly 4 months after being floxed by Cipro, I still have some of those pains but far less intense and in flare-ups, rather than all the time. And as I said before, there are days when I feel "ALMOST NORMAL" meaning the pains are very light at times. So slowly, but most certainly it appears to be fading away.

I'm not a success story as I'm still struggling with the pain on a daily basis, but there is absolutely no doubt that I have indeed gotten much better. Thank God.

I just hope I do return to normal, or leastwise a level where I barely notice my PN -as I have heard of from others.:)

Nervous, just see if the Benfotiamine works for you taking it at night. I take it in the morning. It can energize me if I take too much, so I just wanted to tell you. Just in case you have trouble sleeping.

I was prescribed Cipro for a minor prostate infection and ended up getting poisoned by it "floxed" as so many others term it. Cipro and Levaquin and other Floroquinolone anti-biotic drugs cause Peripheral Neuropathy as a side effect. (as well as other well-known drugs) This is known as Toxic Neuropathy Secondary to Medication according to the Center for Peripheral Neuropathy in Chicago as well as others.

Basically, it's generally said that most PN caused by drugs does go away in time, but in really "EXTREME" cases it MIGHT be permanent.

Of course, the big question is what is determined "Extreme" as most people suffering from PN will certainly feel they are extreme cases due to the pain they get. But there doesn't seem to be an answer for that. Below is my personal blog-case and how I ended up with PN, though I don't know if I'm an extreme case (I certainly hope not - that would lean towards a permanent damage, and frankly, I don't feel like that now-a-days)

I have Peripheral Neuropathy from a prescribed, 21-day treatment of Ciprofloxacin (500 MG twice a day) back in June 2012 for a case of prostatis. After 3 weeks, I first noticed the pain and then I quickly stopped taking it after noticing very severe pains. Now, 3 months later in October, I still have frequent pains though they are far less painful.

At the time, I was taking Cipro I was also taking the NSAID Naproxen (1 pill per day and my 1 MG of Clonazapam twice a day). I have discovered afterward that taking NSAIDS and benzos such as Clonazapam/Klonapin while taking Cipro augments Cipro Toxicity. I have had many tests done – I do NOT have diabetes or MS. So this suggest further that my Neuropathy is from taking Cipro.

I had regularly drunk less/or about one 6 -pack of beer on the weekend – so alcoholism seems a very unlikely cause. Now, in October of this year, I still suffer from daily pains of needle and pinpricks and cramps, especially in my feet, toes, and fingers. What has changed is that I no longer feel the hardcore stabbing pains in my toes or the prolonged cramps.

I even have days where I feel “Almost Normal”. Basically I’m afraid of what most Cipro poisoned people are of – that this pain will last for the rest of our lives. Still, I feel much better then I did 3 months ago, especially after taking the four vitamins I’ve been taking daily since august. (Vitamin C 120 mg, Omega 3 120 mg, Magnesium 250 mg and B-12 500 mcg).

The thing is, my urologist did NOT tell me the dangers of the drug, and even told me to take it with NSAIDS and my Clonazepam! I'm was also told to take it for another three weeks, which luckily I did NOT!!! 2 ER doctors told me the PN was most likely from Cipro which is very rare for doctors to admit. 1 doctor told me to stop taking Cipro immediately and the side effects will fade away in time. Which seems true, at least to a certain extent. --Of course the time to heal probably varies from person to person.

I asked why they thought this and they said: "You have no history of any ailment that would give you PN - it would be astronomical, a million to one, that you'd get PN by any other means at exactly the same time you've been taking a drug well-known to cause it."

Basically they said all they could without getting into trouble that Cipro caused my PN -still, my neurologist doesn't believe it, despite all the tests that I took that eliminate other causes. :cool:

I told my neurologist that I still have frequent pains daily, especially in my hands and feet (fingers & toes mainly) and truthfully they are fading away, just very slowly, as they are clearly not as severe as before.

She simply told me -" if they are fading away -then you don't have anything to worry about then."
As condescending as she sounds, I hope it's true.

:) hi everyone i am new and had gotten small fiber,we think it has only been 9 weeks with it,after recieving a tetanus vaccine! i am so new that i just got a mri approved for my head,wich i think will show nothing!my neuro said this will go away and kind of dismissed me!pain is about a 8,burning,numbness,you guys know!my question is since it is immune,i cant seem to find anyone who just let it go and healed naturally,has any of you with an immune neuropathy?also,is ivig treatment time sensitive,meaning a year from now can i get it and will it work being that long in the neuropathy?i love everyone got better on this post naturally,please share all you can on that,that is the way i want to go,thankk you and God bless,know that God has a plan for us even if we have sickness his grace will get us through!

Welcome to NeuroTalk:

I am sorry to learn of your distress. Vaccines do cause reactions in some people. We have had posters here with H1N1 reactions, adult pertussis, rabies vaccine, etc.
I know of one other who had a tetanus booster and ended up with long term side effects. (she doesn't post on NT much anymore). The gentleman who had the H1N1 reaction was from Canada, and he was given 2 injections of that, by accident, and had severe problems. His doctor put him on steroids.

The reactions mostly come from the adjuvants in the vaccine. Some people have temporary reactions because of these and others may develop long term reactions because of their genetics and may be triggered into an autoimmune reaction.
Dr. Blaylock has videos on YouTube about vaccines. You can search him there. I have a vaccine here also with more information.
http://neurotalk.psychcentral.com/thread163906.html

hi mrs.d,i looked over the info,i guess what i am looking for is ppl who had a vaccine related neuropathy and what they did?and how the future was with no treatment?i am not getting much help and i have just decided to let it go,take the vitamins and see if it will go on its own or get better,i dont really know of anyone who has had this happen and i really dont want to start ivig if i dont have too,what would you do mrs.d? i ask my family dr. he told me to stop testing and wait it out,just nerves i will do more harm than good,but if there is no cure than my body will do what it wants! any help or advice at this point will help

Use our search function and keyword "vaccine" and you will find the posts here.

I believe many people have reactions. In fact if you watch the TV ads, for the various vaccines, they state on the commercial the risk of GBS... which is a serious motor and sensory neuropathy.

It is just that the medical community WANTS to give vaccines,
and doesn't want you to refuse them.

http://www.vaccineinjuryhelpcenter.c...-nerve-damage/
this link will explain in more detail.

The people who get reactions are sometimes diagnosed with something else entirely at the time and doctors typically won't connect to the vaccine at all.

mrs.d that was scary reading all the posts about what happened after the vaccines,i cant read stuff like that,although it is true,i have to stay positive and now my mind and my body are connected! God is good and this will all work out!:)

mrs.d,i am taking the vitamins and i also am joining a gym,what is your view on auto immune neuropathy going into remission on its own?also,any more advice?thank you

Some mild reactions may clear on their own.

But typically autoimmune reactions are serious.
Alot depends on what the adjuvants are in the vaccine.

The more irritating aggressive additives cause more reactions.
The worst is thought to be squalene. This is supposedly not in US vaccines, but H1N1 imported to US after we ran out, had it.
And the military supposedly used squalene in the Anthrax vaccine given to the soldiers who went to Iraq. Squalene has shown severe risk in animals to cause autoimmune reactions that are serious.

mrs.d i agree with you,i will not ever get a vaccine,i only got the ones since i was a kid and only 2 tetanus shots my whole life! i stepped on nails! lesson learned to late,i know they were from sanifi pastur,i think im spelling it wrong,so i have no way of knowing whats in them,:rolleyes:but anyway,i just have pain,numbness,and no weakness or loss of reflexes so who knows! i just want to thank you and also thank you for helping all the other people who have no one to talk to about their illness,that makes you awesome.................

Hi Jesse M.
I consider myself with severe neuropathy, hands and especially feet and lower legs.
For the past 10 years or so, I've had to take Cipro for problems related to diverticulitus. At least 3 times, maybe 4.
Can you give me more information on the Cipro "Floxed" condition?
Thanks!
Mike

Until Jesse answers, here is my post on fluoroquinolones:
http://neurotalk.psychcentral.com/post661103-2.html
There are many links on that post, you might want to explore.

And how long does it take for the nutrient approach to help.....months? as it hasn't helped me yet.

Cipro PN Can Heal
 

To Mike B:

This is a long post, but I hope it helps – I don’t see many others with Cipro PN here. Nearly 3 years ago I had divertculitis and had to take Flagly for that infection. I was told outright not to take any NSAIDS, as they are bad for the stomach. Flagly can often cause PN, too – but I had not taken the full prescription nor did I mix it with any other drugs, so it did not cause my PN.

My PN was indeed, caused by Cipro, which I took about a year or so later. I have since collected a lot of information about Cipro induced Neuropathy, many from actual doctors, who are now well aware that Cipro can cause PN.

It’s the 3rd week of January 2013 and I still have PN (nearly 7 months now). However, the improvements compared to the pains I once had are truly wonderful. Meaning that I have healed about 70 percent in about 7 months. Now, this does not mean I’m not suffering, as I do have painful flare-ups, mostly only lasting for about 7 days or less and this about once a month. But each flare-up has been less painful over the last few months.

Despite being so lucky, I still have serious distress over PN pain issues. I still have mild to light PN pains in my feet, toes, hands and fingers as well as other parts of my body from time to time every day, but most of these are very light. The major pains have all gone. Meaning, I no longer suffer from stabbing pains or severe pains in my body at all.

What’s very different about me and some other people in this forum, is that I believe that many people with PN have, can, and will heal completely from PN. But there is some interpretation as to what you consider “completely” healed. With Cipro caused PN, there have been cases where people have indeed completely healed, some faster than others.

This has to do much about the circumstances and the biology of the person when taking the drug. For example, I’m positive that taking NSAIDS and Clonazapam/Klonapin while taking Cipro greatly increased my chances of getting PN from it. Also every person’s body is different.

Some people have taken 6 weeks worth of Cipro with no reactions, while others got only temporary PN before it faded away. This has to do with how much damage was done to your nerves, as well as how quickly you stopped taking the drug. In turn, healing heavily depends on how well you treat yourself.

I was always a very anxious person and when I got PN I was absolutely devastated. In fact I was truly suicidal. But I did certain things that gave me an advantage despite being in a very bad situation. The first was I stopped taking Cipro when I started feeling the pains – this was still late – 3 -weeks to be exact. (I never took the other 3-week prescription I was ordered) I then started on certain vitamins very quickly, mainly B12 and Vitamin C. Later I got information from this forum and added more vitamins to my regiment, carefully picking out what I felt was best for my personal situation.

What’s also not addressed much is that Cipro has other neurological effects to the brain including anxiety and depression. But honestly there is very positive news about PN induced Cipro, that being it can heal – leastwise it can heal to the point where your pains are reduced to very light ones, even barely notable at times and in this case, although not completely healed, you can live and enjoy life just as much as if you were. I have personally reached that level over the last 2 months, being stable most of the time, only interrupted by flare-up pains every 3 weeks or so. In some cases, people have been completely healed mainly from the fact that their nerves were not damaged too badly to begin with.

Currently, I just had a flare-up that lasted about a full week - lots of pins and needles stings and mild cramping in my hands and fingers and toes. Still, it was nowhere near the pain intensity that I had a couple of months ago. Still, after feeling nearly normal for weeks, getting a relapse of pain can be very scary and very depressing, which in of itself can worsen PN pain. I notice that rainy days that last for over 2 days will often start a week long flare up for me.

Also staying away from beer/alcohol has been a bit of a problem for me during this time. Though never a heavy drinker, I currently drink about 4 to 5 lite beers on a weekend socially. And now never more than a six pack even on celebrations. Oddly this doesn’t seem to affect me much, maybe because I drink at such a slow pace, or I skip a week here and there. But I do NOT recommend this either. When I drink, it’s to relax some and let loose, never to indulge or get drunk. Still, I have to curb this as well.

Cipro is a medication that should NEVER be taken. It is too powerful and affects the body and brain in ways that are still not understood till this day. If you are taking it, I suggest dropping it immediately. All (not some) ALL fluoroquinolone drugs should not be sold period! They are too experimental, even the top pharmaceutical experts agree on this.

Recently I dropped to 0.5 Clonazepam/Klonapin per day. This for anxiety only (I was taking this drug for a year before getting PN). According to my neurologists, it does not cause PN but it does not mask pain or control it either, it does calm the anxiety caused by pain. I do NOT suggest this - as I am no doubt addicted to this drug even at this low dosage. I take no drugs for pain, no aspirin or over the counter drugs either, even in a flare up. What I do take are vitamins. Here is my current list to which I feel has helped me heal quite a lot, thank God.

I’m currently taking these vitamins: B12 500mcg, Omega 3 120mg, Lycopene (for prostate health) Slow-mag magnesium, regular B1-thiamin 300mg per day (half in the morning-half at night) Vitamin C 100 and sometimes 200mg per day.

I’m currently considering trying out other supplements such as the Methylcolbamin B12 and Benfotiamine B1, but still can’t find them at my local stores. (Though I heard they may now be carried at Wal-Mart). And perhaps some mitochondrial aids, like acetyl carnitine, CoQ-10 and r-lipoic acid. Though I will have to do major research on these.

Lastly, I suggest taking the positive information from forums you read and most definitely stay away from negative ones! Negative posts about endless permanent suffering are only going to make you feel worst and scare the crap out of you. Plus most of the times they are not true, you can heal from PN, if not completely, then certainly to a point where you can live with it, often happily so. Here are some positive articles I found from real medical experts concerning Cipro and drug induced neuropathy. I hope this helps. God Bless.:D

http://peripheralneuropathycenter.uc...ic/drugs.shtml


http://www.aan.com/elibrary/neurolog...01107020-00016

Thank you for your thoughtful post.

I quoted the above because it is a good reminder. My PN has not been "cured" over the time that I have been taking supplements, but it is quite a bit better in many regards, and, considering that my doctors wrote me off as hopeless and incurable-untreatable, I know that I am making meaningful progress.

I know exactly what you mean. I have discovered that PN is a disease of horrible symptoms that works on two fronts - one is the actual pain of it -and the second is the depression and anxiety that comes along with it. If we could honestly separate the depression and anxiety it causes, it would be a lot easier to deal with.

It's my understanding in all honesty from those who have PN, as well as doctors that are experts in the field, that PN DOES improve - MANY times to the point were it is truly healed or fades to the point where it doesn't affect your quality of life much. If it wasn't for the flare-ups I have every month - I would already be at that level. ...Either one would be fine with me.

But echoing your point here: even if PN is permanent for some it does NOT mean that your level of suffering is. By far, most people WILL get better and it's best to remember this.

I also pasted a "Positive" link below to a guy who had a very similar situation to mine, but he took the drug 3 weeks longer than I did. It's the response from the doctor at the bottom that's very interesting here, as he explains that PN nerve damage CAN indeed heal. ...Happy healing & God Bless.:)

http://www.justanswer.com/neurology/...cin-500mg.html

chiming in
 

I have PN caused by two ankle surgeries. Yes it did improve with the vitamines that were mentioned in these posts. I didn't think it would get better, and was very skeptical of improvement. B12 shots, CoQ10, Bcomplex, all are helping. I am amazed. I wish all of you the best. ginnie

Joyful for YOU
 

No patient should endure the feeling of being written off by their caregivers.
Thrilled for you strides in the direction of better life are yours ANYWAY!
Mark56:hug::grouphug:

Finally got better
 

I haven't been on here for a long time. I got very sick last spring with a whole host of seemingly unrelated symptoms. I was nauseated, I had numbness and tingling in my hands & feet, I had head pain, hand tremors, palpitations and tinnitus.

I had been to two physiatrists, my family doctor, a chiropractor and several PT's. I had a brain scan, MRI of neck and back, nerve conduction tests, blood work and was eventually referred to a rheumatologist. Everything came back normal - except all the long standing problems I knew I had with my back.

Two trips to the ER showed that I had low potassium. That was addressed with potassium IV and supplements. The heart palpitations went away. Another trip for the tremors showed that my TSH was very low (my T3 and T4 were normal). Apparently the tsh had been dropping for about 2 years. I've been on synthroid for over 30 years.

I had high anxiety about all my symptoms and was told to see a therapist and take an antidepressant. Neither worked and I stopped both.

It was after I saw my endocrinologist and got the right dosage of synthroid that my symptoms went away. As I got healthier my anxiety lessened. Now, several months on my proper dose and the numbness and tingling are gone.
These are not typical symptoms of low tsh but I had them.

It was a catch 22. I didn't feel well, the anxiety went up, and that definitely adds to the symptoms. Even now, it will increase my tinniutus.

So, no supplements. Nothing more than adjusting my synthroid dosage. Now my back problems - which are a train wreck - are another problem. But I will say that PT has never helped. I exercise. And try to eat right. I think that helps.

So, numbness and tingling can often have an obscure reason.

I'm not sure what your circumstance was to begin with or how you actually got PN, but I'm very glad you are feeling better now.:)

I was thinking of adding Alpha Lipoic Acid to my vitamin regiment but don't know the concerns or dangers of it just yet. I have to research a whole lot before I try something out. But I heard that Alpha Lipoic Acid was one of the best antioxidants that really helps to not only relieve PN pains, but actually heals it by catering and feeding the mitochondrial damage of nerves and such.

Does anyone here take Alpha Lipoic Acid for neuropathy? And if so, please let me know what it has done for you, as well if there are any side effects from it.:cool:

I am so glad you are doing better, Grandma123. :)

Jesse, I have taken Alpha Lipoic Acid for about 3 1/2 years.

I take that, Benfotiamine, b12, D, L carnitine (Carniclear,) Pregnenalone, GLA, Fish oil, magnesium citrate powder, vit C, Ground flaxseed, whey protein in my really heathful smoothies, NAC, Vit E, Glutatione (Liposomal) Green powder, and a lot of other great things. I also eat the best foods with no processed sugar or carbs. to heal the nerves, mitochondria, energy, hormone support, antioxidents and immune system.

My CFS and Dysautonomia (autonomic neuropathy) are so much better.

For me, it is not how one or two things work, it all works together for healing.