25 year old male. very scared.
 

Hi. I'm a 25 year old male. My symptoms started on 9-3-12 and started as tingling in the left foot and left arm. It then progressed into electrical shock sensations on the skin in different areas of my body. Then it turned into pain in my extremities, joints, fingers. My nerve conduction study showed neuropathy in the legs but i am convinced i have small fiber throughout my whole body since i feel the pain and electrical shocks everywhere. brain mri, neck mri, and bloodworks have all came back normal. I'm trying to convince my neuro to send me for a skin biopsy even though he says he doesnt think i need that yet. Someone please help me. I need someone to talk to about this horrible problem. email me at (please use forum contact methods)

re-scared
 

Mustang0227,
Take a deep breath. Not all neuropathies are serious, but they should be looked into. I do understand your fear. Two years ago, I sat down in a recliner, feel asleep for ten minutes, and awoke with complete paralysis of my left arm from the elbow down. I could feel, and knew what I wanted to do with the arm, and hand/fingers, but they were completely paralyzed. I went into a neurologist, who sent me to rehab, didn't seem concerned, but when I showed up at the physical therapist's office, she read the diagnosis, I almost flipped out. She said the neurologist's diagnosis was radial nerve palsy and I MIGHT be able to get some use back, if I got any back AT ALL! It would have meant the end of my career. Wiped out in ten minutes. 6 weeks later, movement began to return, and it is now normal.

Don't expect the worst, regardless of what is said. Take it day by day, and for your peace of mind, get a second opinion. You may have a large nerve that is effected, and since our smaller nerves branch off the larger ones, it can effect the messages the smaller nerves are getting.

You aren't being silly or paranoid in your fear. When things like that happen to us and we don't understand what is going on, its terrifying. Also, if you are in panic mode, you may get additional pain or tingling. Have you ever had someone jump out from behind a door and yell Boo!! when you weren't expecting it? It feels like a blast of shooting nerve stimulation all over the body.

Find out if there is a compassionte neurologist in your area that has good people skills and will take the time to explain what is happening to you. Having someone say, "well, you have a neuropathy" and not much else, it leaves you with a lot of fear and questions.

Let us know how things are going.

Sam

Hi & welcome. Im pretty new on here, but have very similar symptoms to you. Mine began in june this year, burning, tingling in both feet then pain as well. Electric shock pains in my legs. I have now started with numbness in my fingers. I have had my nerve conduction test, but no results yet. I am waiting to see my neuro in November.
Its scarey isnt it, not knowing whats wrong with you or how & if its going to progress.
Im finding it hard to deal with to be honest. Im a fitness instructor & cant work.
Hope you get sorted out :)

Hello Mustang
 

I want to say hello and welcome you to Neuro Talk. You can talk here, and people will try to help. You have every right to be afraid. Being young makes any neurological problems scarry, as you think it may last. These conditions have help. It is really important to find a doctor able to make a DX. Your doctor was wrong not to do the biopsy. It seems like you believe that physician has put you into a dead end. don't give up. Try to go to a teaching hospital in your area. I hope that folks will respond and give you some names. I do wish you all the best. There is help, but sometimes it takes some real effort to find the right kind of physician. ginnie:hug:

the neuro i have seems like he could care less what is wrong with me. but on the otherhand even tho hes getting ready to wash his hands with my case he did say he would send me to university of florida if these next 2 bloodworks he sent me for come back normal. the 2 bloodworks were spep and iep. the pain is getting harder and harder to tolerate and now 900mg of gabapentin does nothing for me. im in the orlando area. if you have any suggestions let me know or if u know of any good neuros in this area.

where in the midwest are you? i used to live in cleveland and wish i was still there because i probably would have gotten better treatment at the cleveland clinic. down here in florida it is really hard to find a good doctor. but in regards to the neuropathy most of my worry comes from the pain also. the more painful it gets the more i start worrying.

Cipro Induced Neuropathy - need advice.
 

What are my chances of healing from toxic neuropathy?

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 – the 1st week of 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 burning, 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). Please give me your opinion on my case, as I think it will help many others with similar circumstances.


Reply

Welcome to NeuroTalk:

Dr. Cohen has some suggestions on his website.
And there is this new article:
http://articles.mercola.com/sites/ar...t-Failure.aspx

Make sure your magnesium is not OXIDE form. Should be a chelate like glycinate, citrate, gluconate, or malate. Or SlowMag.

Also try not to strain any tendons, now. Tendon ruptures can happen anytime after stopping fluoroquinolones.

try WSN Nerve Support Formula. I've heard of people that got good results and thats what im going to start taking until i get a real diagnosis of whats wrong with me

Hi Mustang
 

I am sorry the pain is so Bad. You are in Florida. I go to a fantastic Neruologist. His name is Dr. Kevan Boyer, in Bradenton Florida. He not only is extremely intelligent, he has compassion. His nurse on the other hand, is crabby all the time. I am not sure of the protocal to get into seeing him, and if you need a doctors referral or not. It may be worth it to call his office to see how he does things. 941-750-0602. I also go to the best doctor I have ever met to deal with pain. Dr. Emese Simon On Robinhood lane in Sarasota. She is a physiatrist/ and a pain specialist. She has helped me alot, even though I don't have the same conditions as you do. Maybe it would be worth the drive to seek out these physicians. It is usually by word of mouth that you find the best doctors anyway. I hope that you can find a resolution. Nobody wants to suffer like that. I wish you all the best. ginnie:hug:

Mrs. D, I watched the videos. I love the Mercola site as well as Life Extension Foundation. I am a member of LEF. Thank goodness for them and other sites that tell the truth.

I am actually feeling so sad now reliving what I went through with Leaquin. The sad thing is that my Gasto doc I have now says he sees no evidence I had that. Makes me ill to think of that.

I know so much more now, how sad we have to learn the hard way. I am going to tell my son and his wife. I don't think I have done that.

Thanks for the videos.

Re/very scared
 

Mustang,beleive me when I say that we all know where you are coming from!! It took 3 year's before any Dr's dx me with RSD. They all kept telling me that it was all in my head! I fianally went to a neurologist who gave me am EMG test. My finding's were way off of the chart's!! I now have full body RSD,for over 10 year's now. I guess my ? to you is,have you seen a Neurologist or any pain Dr's?? I cannot stress enough how much you have to push your issue's. Or you will just be another #. I also wanted to welcome you to this Great Place! It has so many wonderfull people who are full of knowledge! Hang in there! Breezy55. :grouphug:

To "mrsD" : What's wrong with the "OXIDE" Form? -- The GNC brand I've been taking says: "Magnesium as 250 mg as 63% Oxide and Magnesium Gluconate."

I avoid taking any NSAIDS (such as Alieve, Naproxen and Aspirin) as in people affected with Cipro toxicity, it can “augment” the problem. I hear Tylenol and Acetaminophen is safe though.

Still I don't even take that. I only take clonozepam/Klonopin (0.5 twice a day for anxiety and pain management) and no other drugs. I'm afraid to take anything else that might worsen my symptoms, I as feel I have definitely had some great healing strides since July.

I seem to get worse flare-ups (especially cramping) when it rains or when their is really high humidity. Is anyone familiar with how the weather effects your NP pains? I live in Chicago with harsh winters, I hope the usual cold weather doesn't do too much damage this season.

…And also, is anyone here with Cipro/flouroquinolone poisoning having a hard time with their Neurologist? I get the tests I need but she keeps thinking that Cipro CAN'T cause Neuropathy, despite it being directly on the severe side effects label. ...How ironic.

Pain and fear are a difficult cycle to break. Especially when you don't have answers. Finding a diversion helps some. Whether is coming to the forum, reading or a good show on the tube, anything to get your mind off the pain for a bit. Talking yourself through it may help as well. Its easy to be consumed by pain and fear if you let it. I wish I had something more tangible to offer, but I haven't figured that one out for myself, let alone be able to stop someone else's pain.

I'm in Indiana. Not being raised here, it surprised me when I finally found a pain specialist here. He's great and his staff is nice too. It was only luck that I stumbled upon his clinic. There may be someone in FL. that you just haven't found yet. Don't give up. If you have a good friend or spouse, just venting to them can make a difference. I'm glad you found this forum.

Sam

About Keeping your mind off of pain - or "Escapes"
as they are called.

Here are some things that help me personally. ...As it is, I have flare ups of bad days when the pain is very annoying and almost unbareble, but then days when I certainly feel it fading away...times where the pain is far "less frequent" and "less painful" - the 2 ways I judge my healing. I can only hope these are good signs.

I keep a "daily journal" of how I feel each day & what I've done. This helps me figure out what irritates my symptoms as well as what heals them, i.e, bad weather, exercise, new vitamins, whatever.

I started eating better and lost nearly 30 pounds in 3 months. (quit Fast-Foods) I will continue to try to be a healthier person, even when this neuropathy stops - better for life in general I think .


Escape #1: Dreams

On an odd note - I practice some strange "escapes" that keep my mind off of the pain. First off, I take no medication for the pain at all. I only take 0.5 mg of Clonozepam/Klonapin twice a day for the anxiety - the rest of the stuff I take are vitamins. So I'm always looking for an escape.

-- so, back to the escapes - I realized I dream every night and I kind of live a 2nd life there (in the dreamworld that is - like most of us ) where the pain can NOT follow. So that's something we can all look forward to EVERY night.

In the morning, I write down the dreams in a daily journal so I can remember them as life-experiences. We literally spend half our lives sleeping, so I figure remembering the dreams (no matter how odd or silly) owes the same as remembering real experiences at times.

Escape #2: RPG Video Games

I also got into playing certain types of Video games. Yes, I'm 42 years old, but I noticed that playing "RPG" or Role Playing Games (On X-Box or PlayStation, or whatever) provides a weird escape from real life. RPG games don't require much rampant button pushing as most video games; so it's not so bad on your fingers - and after a while playing them, they place your mind in an alternate world so to speak.

This might seem downright stupid. It certainly sounds stupid, but it's not. I actually got this idea when I heard that video games are banned from prisoners -why? Not because its entertainment (many prisoners have TVs) but because they make time pass quicker and provide a kind of limited alternate reality that Wardons don't want prisoners to have.

It seems to me, that your mind can only focus on certain things at a time - playing video games for a while during your day or after work in your personal time WILL relax you and take your mind off of depressing thoughts -plus they are just fun in general.

There are many RPG games for women, too like any of the SIMS games. I play Fallout 3 -an apocalyptic game & some cool Star Wars ones, too. ..Is this immature? -- it probably is - does it work as mental therapy? - I KNOW it does for me.

In my therapy group other people use TV shows to pass time and for similar reasons (any Netflix or cable TV Series to be specific) to get their minds off of negative things - I think gaming may be similar, just more interactive. The difference being, games place YOU in the show rather than just watching it.

Anyway, that is my two thoughts regarding "Escapes".:cool:

Magnesium oxide is not absorbed to any useful extent. It remains in the GI tract.
Mixtures tend to not be real mixtures. Magnesium oxide is the smallest volume maker in pills because oxide does not weigh much. Gluconate is a heavy portion however, and I would not expect much of it in that tablet.
There is a link to the studies on absorption in my magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html
Magnesium oxide is however an excellent laxative and is used as such (Phillips tablets).. because the magnesium remains in the bowel.

I've called manufacturers and they cannot tell as a rule from their recipes how much of each is in a mixture.
http://www.drugstore.com/products/pr...6&aparam=92272

This means 63% of your daily RDA requirement value. However I take issue with that. Magnesium oxide is 60% magnesium elemental by weight. That 63% on the label does not mean you will ABSORB any of it.
So 250mg of the magnesium oxide is 150mg magnesium by weight, but very little if any is absorbed from this. Don't count on anything being helpful from this product therefore.
from http://ods.od.nih.gov/factsheets/Mag...hProfessional/

My link to my magnesium thread gives more details on this subject. You can read further there.

Oxide therefore does not give much if any absorption into the blood stream, and is to be avoided.

For MrsD:

That was very helpful. I did not know that. Still, I can't find any other types of Magnesium in my local stores. For the time being - is it alright if I keep taking the Oxide Magnesium that I'm taking now? ...I mean will it hurt me in some way?

--Just asking until I can get a hold of the other type.

The oxide won't hurt you unless you take alot of it...then it will cause diarrhea.
But it is not doing what you want it too.
Of course you didn't know this, along with most doctors who still find it in their reference books:


WalMart carries SlowMag and its generic called Mag64, or MagDelay. SlowMag was initially formulated for use by doctors for patients low in magnesium. It remains over the counter too.
Your initial dose should be one tablet twice a day at different times.

Ask at the pharmacy if they are out of it, and they will order it for you.
http://www.walmart.com/search/search...straint=976760

Any pharmacy can order this for you... drugstores, Kroger's
Target etc. Will take a couple of days, depending. WalMart may take a week.

You know the exact date of your onset? That is unusual. Can you also remember exactly what you were doing then, before that date? You need to be a detective to find your trigger.
You are young for gammopathies. (that is what your newer tests are for).

What do you do for a living? Hobbies? vaccines, illnesses, food reactions or food poisoning, solvents, chemicals.

Do you take any drugs, including over the counter medications?
Did you have a B12 level done at all? Do you eat alot of wheat products, gluten?
Any medically invasive procedures? traumas, accidents, or surgeries?

The more you can tell us the more it may point to a path for you to try and heal.

To mrsD:

Thanks, you saved me a lot of time with such practical advice. I would have been struggling to get that info from anyone and anywhere else. I'm glad to know I can get this from a store rather than getting stuff on-line as I somewhat distrust buying supplements online.

It seems you know more about dealing with PN than I do and I'm tempted and a bit embarrassed to ask you questions, especially as new circumstances arise. But I don't want to overburden you, so if you don't mind - I'll ask them one at a time.

I'm still baiting a question that I feel a little silly for asking though - but I'll ask you anyway. It's about the weather and PN pain. Is it just a mind trick, or does rain and high humidity actually irritate PN pain? I don't know if this is in my head, or if there is some actual basis for this kind of thing. :D

Scared!!
 

Sam,I live in Wisconsin,I am so happy that you found a pain specialist!! Keep up the fight,we are all with you!! Breezy55 :grouphug:

Many of us here on PN and on the other NT forums that are pain related...find low barometric pressures (from storms/rain) increase pain. It is common, I think.;) Even my kitties get sluggish when it is low barometric times. LOL

Some find high temps with high humidity also a problem. But those who normally live in those areas, don't complain as much as people in more temperate areas. I myself find burning more common during hot temps, than cold. But that is just me.

I find it difficult to breathe comfortably in very humid conditions, however.

Hello Jesse
 

Always feel free to post your questions to Neuro Talk. None of them are silly. People do care on this site, and will always try to help you. Glad you found Neuro Talk, feel welcome and at home here. ginnie:hug:

The weather has a huge affect when a person has RSD! Rain,snow,quick change's in temp's,etc!! Breezy55 :eek:

To mrsD:--

I bought the "SlowMag" today at CVS. Magnesium Chloride: Included -- (238 mg of calcium, 143 mg Magnesium, chloride 405 mg, and sodium 5 mg - this amount based on a 2 tablet serving per day) It was 15 bucks for 60 tablets. But the only one I found was the one with calcium added with it.

I don't know if this is good or not. I heard calcium in high doses could aggravate your kidneys and or prostate, I'm not sure. I did have a Kidney stone last year. So I figure I'd take 1 pill a day instead of 2, with the idea that the better absorbing magnesium will equal out the old oxide type I was taking.

Is this a logical idea? ...I'd really like your opinion on this.

Also, I don't know what "Chloride" is, but 405 mg seems pretty excessive, so I'd appreciate your thoughts about that, too. ...Thanks. :)

The amount of calcium in it is not really in the supplement range for calcium. Don't worry about it. Supplement doses start at 1000mg a day and up. That little bit of calcium is in all the SlowMag versions, including the generic.

Chloride is just the carrier molecule. Most chemical compounds are in two parts. The most common chloride is sodium chloride, which is table salt. The amount of chloride in this is a spit in the ocean compared to one fast food meal in a restaurant. Just about every processed food is loaded with salt, and sugar in US. There are 2 chloride molecules for every magnesium in this product... this is because magnesium is divalent..remember your HS chemistry?
MgCl2.

Here is an article on chloride:
http://health.nytimes.com/health/gui.../overview.html
It is rare that chloride is a problem in people because the kidneys, do remove it. Those in hospitals on massive diuretic therapy may become
low in it. But it is so common in our environment that we consume it commonly.

There are some simple restaurant meals that can have 2,500 or more milligrams of sodium in them. Yahoo often has "Eat this and not That" snippets to reveal this abuse. In fact the men's book is quite interesting for everyone...
Read this site, if you dare...
http://eatthis.menshealth.com/home

example:
http://eatthis.menshealth.com/slides...staurant-meals
This massive burger has 6,600 mg of sodium !!!!!! And chloride is in equal measure since NaCl has one chloride per sodium ion.
http://eatthis.menshealth.com/slide/...sharetagsfocus

Magnesium chloride is one of the forms tested that showed good absorption. Neither the calcium nor magnesium is 100% absorbed, as the body has transport systems to do that and it is selective. However, a goodly amount of the magnesium is absorbed into the blood stream, to be effective for you.

If you eat magnesium containing foods, like almonds, beans, oatmeal, and yogurt, you need less magnesium. Two of these provides about 1/2 the RDA for those eating some but not ideal amounts of magnesium. People lose magnesium in urine daily, as well. Alcohol and caffeinated beverages, some drugs prevent normal magnesium levels in most people. Studies have shown that 70% or more of Americans are below the daily RDA of magnesium daily. If you take acid blocking drugs you are blocking its absorption from food, along with calcium and zinc too.

If you don't recall your high school chemistry, now is the time to
have refresher courses. I do not have the time to provide chemistry lessons for every poster. That information is easily found on the net.

the reason i know the exact date of my symptoms is because i was at a baseball game when i started feeling the tingling in my left foot and left arm. so whenever the doctors would ask me i would just think about the date of the game. they tested me for b-12 and it was normal. so was potassium and electrolytes. i wouldnt say i eat A LOT of gluten but i dont live on a gluten free diet either. as far as lifestyle i wasnt really doing anything out of the norm. working at a restaurant part time, going to college part time. since i eat out a lot i was thinking maybe it could have been something toxic in my food but doctors dont seem to think that. my bloodwork for spep/iep are now back and it is showing an abnormal protein band. my neurologist doesnt know what that could be so he wants to send me to a university so the medical team there can figure it out. please let me know what you think of all this. oh and also, no, i wasnt taking any drugs before this happened and no surgeries either.

Abnormal proteins thicken the blood. And so does eating high carb, high sugar, high fat foods. These foods raise triglyceride levels which in turn make blood more sluggish. When blood cannot circulate in tiny vessels (most of them in hands and feet) then metabolic byproducts cannot be carried away from cells, and oxygen and nutrients cannot get in. So the nerve cells, react first, because they are there as a warning system to tell us something is wrong.

This site for men (but also valid for women) often evaluates foods served in restaurants, and reveals the nutritional content of the meals.
http://eatthis.menshealth.com/slide/...sharetagsfocus
The whole site is very informative and I'd recommend it to you to help you choose foods that will not impact, strain or impair your health.

Some blood proteins are mostly benign....MGUS is one that only in small numbers of people progress to multiple myeloma. But you will have to see a specialist for further evaluation as your doctor recommended.

http://en.wikipedia.org/wiki/Monoclo...d_significance

We've had several people here over the years with MGUS.

25 is rather young for this, but if it is something you inherited, then perhaps, this is your time.

I'd try and not eat at restaurants so much. The sodium, fat and carbs can really be high there.
Also, MSG is almost always added to commercial foods to make them taste better. And MSG is very bad for nerves... it can make pain worse. The pain receptors, NMDA receptors run on glutamate and calcium. Magnesium blocks them to some extent.
So if you are low in magnesium (eating all those processed foods) as well, then pain will be increased.
This is why I post so much about magnesium. Besides working in hundreds of important enzymes in the body, having low levels, will impact the nerves and PAIN.
http://neurotalk.psychcentral.com/thread1138.html

Another factor? Easy to deal with? The socks you wear. My son had a terrible time with some socks, that compressed his lower legs alot. They left deep impressions in his lower leg when he took them off at night. Sitting alot either in school or work, will make this worse. When he showed me his legs.... :yikes: I was astounded! So now he wears special socks with wider tops, and it is END of the PROBLEM! (and BTW he is not overweight and does not have large legs). And I'd also suggest wearing relaxed fit jeans. Really tight jeans compress nerves at the groin.

And you need to know the B12 numbers exactly...not just "normal". This is because the lab ranges for B12 in US are outdated and very low.
You should be at 400 or higher. Anything lower than that is NOT normal any longer. This continues to be a significant problem with people here.
Some people have gone to many many doctors until they find ONE who knows of the new therapeutic guidelines. So don't let yourself be another casualty of outdated lab ranges:
http://www.aafp.org/afp/2003/0301/p979.html

thank you for all this information. you are of great help to me. i just looked at my b-12 level and it says 85. what do you think is the cause of the problem? the low b-12 or the abnormal blood protein? also i am not diabetic. i dont know if i mentioned that in my earlier posts. as far as b-12 i am taking the WSN nerve support formula which contains a lot of b-12 so maybe that will help? let me know what you think. when they did the brain scan they found no signs of MS but i heard MS doesnt always show on scans and abnormal protein is common in MS patients. could it in fact be MS?

85! That is terrible. Are you sure about that, and not reading another value close to it? Sometimes the readouts are narrow and single spaced and easy to confuse.

You need to be on methylcobalamin NOW...ASAP. 5mg on an empty stomach for 3 months, and have a retest.

Your nervous system, and visual abilities will really start to change radically being that low. You know I think 85 is one of the lowest ever brought here! WHEW!

iherb.com, Puritan's Pride and Swanson's, Vitacost, Amazon, all easy and inexpensive. Please do this for yourself and don't wait for doctors. Even with the old outdated lab ranges going down to 200 ...you are far lower than those!

I think you can spring for the 5mg of methylcobalamin... there is not enough in that mixture you are using now. You can go back to it if your blood levels normalize in 3 months. I hope you are taking that product on an empty stomach? If not the B12 will not be absorbed.

Why are you low?
1) are you taking OTC acid lowering drugs?

2) you could have low stomach acid called achlorhydria.

3) you could have inherited pernicious anemia from a relative. Or you have an autoimmune disease that is attacking the parietal cells of the stomach that make intrinsic factor (this is what carries B12 from food into your blood stream).
Did you have any CBC abnormal results? The MCV in the CBC typically elevates before anemia starts. So elevated MCV might show up. Doctors typically ignore this, because they don't understand it. MCV = mean corpuscular volume of the blood cells showing abnormally large cells in a given volume of blood serum.

4) if you are not eating meat/eggs/dairy/seafood/ and are following a vegan lifestyle, you can get low.

Those are the main causes that people can commonly have.

You'll have to ask the specialist about the proteins in the blood.
Also show him the copy of that B12 result too... that ought to spark an
interesting conversation!

sorry i was actually reading the line above the b-12. my b-12 level is at 576. i freaked when i just read your post and looked over it again. so right now the only concern is my abnormal protein in the blood. also as a side note i dont know if this has any involvement but my dads 2 brothers both died of lymphoma and my dads mom died from cancer also. i believe hers was a blood cancer too. i hope i didnt inherit a cancer from them. :(

That is much better. ;) Not great, but better. So still take that product you are using, and make sure it is on an empty stomach. We like to keep our B12 at 1000 or higher, those of us with nerve symptoms.

Most of the proteins are fairly benign. But it is a special thing, that only certain doctors can evaluate.
Still changing your diet can help with it, and improve your circulation. So don't ignore that aspect.

Thanks, mrsD -very helpful information -and one that puts my mind at ease. I have another question.

I am certainly paranoid about putting anything in my body that might harm or aggravate my PN pains -this is why I do NOT take any gabapenten/Neurotin, Elavil or anything other than my low-level Clonazepam and vitamins. But here's something that has been bothering me.

...Get ready to laugh - I have been avoiding any foods with the vitamin "B6" in it. I was taking a "Men's Daily Vitamin" before I got Cipro Toxicity but stopped afterward, because I did some research that states that too much B6 could actually harm your nerves and worsen your PN, especially if your nerves are already damaged...

Now, I figure I'm getting enough regular B6 from food as it is since I eat a whole bunch of stuff like meat and grains and such. But I make it a priority to avoid bought foods that have B6 added to it.

For example I gave up my waffles, pop-tarts, and all cereals, because B6 is added to them.

In tow, I also have recently stopped using Fluoride toothpaste and rely on regular teeth brushing with an anti-gingiervits "non-Fluoride" mouthwash. This is because "fluoride" is one of the ingredients that make Cipro poisoning so toxic.

I don't know if this is paranoid behavior or not, but I'm just acting on my "better safe, than sorry" impulse here.

I'm curious what you think of this. :D

To be frank, one thing you should be considering is the use of your benzodiazepine drug Clonazepam. And at a high dose at that, IMO.

Long term use of benzos leads to tolerance, and as the benzo wears off, until the next dose, there are mini-withdrawal symptoms. These are almost identical to most PN symptoms.

So eventually you will have to face that Clonazepam realistically.
I discuss mini-withdrawal on this post:
http://neurotalk.psychcentral.com/post924688-17.html

Also a poster here found Diazepam worked in the short run, but in the long run was a problem for her:
http://neurotalk.psychcentral.com/post601718-5.html

Clonazepam and diazepam are very similar. They both have antiseizure properties, and must be tapered off slowly. Very slowly. Sudden withdrawal of benzos can cause seizures in some people. Because they are antiseizure they work on nerves to dampen signals. When they wear off, that releases the nerves to a more excited state, and it can be worse than before. So it becomes a vicious cycle.

This is where you should direct your paranoia, IMO. And it won't be easy or quick to taper off this dose you are on.
The beginning dose of clonazepam (Klonopin) is .25 to .5mg and you are using 2mg a day. A low dose would be .5mg at bedtime.
Dosing is RELATIVE to the drug used. Just because yours is 1mg does not mean it is "low" by any means.


It is wonderful that you got rid of the PopTarts...I don't see how anyone can eat those. :rolleyes: Getting rid of PopTarts, sugary carbs, etc really helps with blood sugar. You can still have old fashioned unflavored Oatmeal.
That has lots of staying power, no sugar added, and soluble fiber for GI health and some cholesterol control. Add a little cinnamon and you are doing well. Most cereals have sugar added...even the Quaker Instant Oatmeal ones. Low fat dressings have surprising sugar content, and may spaghetti sauces are filled with sugar.

Tapering off Benzos like clonazepam is difficult and unpleasant and if done too fast, dangerous. Many patients eventually find that they have
to quit them for one reason or another. This is why they are less prescribed today than 10 yrs ago.
You should be supervised by a doctor if any taper is attempted.

Thanks for the links – I will check them out for sure. I am concerned about Clonazapem and its addictive properties, as you have noted. Currently -and for nearly a year - I only take 1MG a day...Not 2. Just one 0.5 in the afternoon & one 0.5 at bedtime. -- Compared to the 3 MG a day I used to take four years ago – I’m well on my way off of them. I did extensive research on Clonazapam and had several serious talks with 2 psychiatrists and 2 neurologists about it. I was prescribed and already on Clonazapam long before I got PN for around 4 years. This was originally for a chemical imbalance in my brain and for anxiety. In that time, I went off of them for months – then went back on them at a much lower dose.

I was actually off of them for a while, even when the PN was bad, but I couldn’t handle the stress of being in pain – plus the last time, I went off of them too fast as well. Clonazapam is prescribed as a pain management drug by the Center for PN in Chicago and others – it’s the most weak and less dangerous one compared to Elavil, Neurotin and Cymbalta. In fact, Clonazapam is prescribed to deal with anxiety but not to stop the pain itself. However, my doctors believe that it does help relieve pain, by calming down rampant electrical signal/activity in the brain, and thus causing a lessening of pain. Everybody’s system is different, but this seems to work for me.

It is my goal to be off of not only Clonazapam in the future, but also ALL medications of any kind. If I were not plagued by PN pain, I would already be off of them.

In fact, I have an ordered plan with my doctors when this occurs. At the point when this PN fades or goes away – they will put me on Melatonin therapy to slowly wean me off of the drug. They use Melatonin for this very same reason – much so in elderly communities. According to my doctors, this should take no more than a few months at best.

In my own personal experience, I went cold turkey on it once and was affected badly with withdrawal systems, but I did get over it. Indeed, withdrawal has a lot of symptoms similar to some PN – but I have to say NOT the nerve pains – just the jitters, anxiety, tremors, and psychological effects.

I went back on it on advice from my Neurologist, who said that taking nothing for PN pains would only push me over into the mental breakdown zone. Though prescribed to me at times for PN: I refuse to take Neurotonin/Gabapentin, or Cymbalta. According to specialists, they are far worse than taking Clonazapam, because they can cause permanent damage to your nerves – the very same affliction that PN horribly causes in the first place.

Basically, I won’t take that risk. …And frankly I can’t, since the Clonazapam I take already has some effect on my GABBA in my brain – and adding another medication that would affect the same region simply isn’t wise.

Also, Clonazapam withdrawal is NOT permanent – just really uncomfortable. The concern with Clonazapam is the potential for addiction to the drug – but even this addiction is not permanent.

I am feeling a bit better every day so far - thank God. I truly hope I get to the point soon where I can get off all drugs. I'm certainly not an advocate for Clonazepam or any other drugs for that matter. As it is, the Clonazepam is the ONLY drug I’m on now and compared to others in my mental health group, the 1 MG dose per day is a pretty small dosage compared to the other strong meds they are taking and at such higher daily rates. Still, I look forward to the day, when the only pills I take are carefully chosen vitamins. :D

...besides the Clonazepam issue here -what did you think about avoiding the B6?

...

B6 isn't the problem with the junk foods, simple worthless carbs. It is great you are eating better. Our diet is the most important thing and we have full control of that. Then supplements and exercise.

I don't take meds, but I hope you will be able to learn all about them with Mrs. D's links.

I am so happy you feel better and I hope you keep improving.

The only reason B6 is in those carbs you consumed, is to give them "some" nutritional value (which is minute IMO). Often empty food or food with highly refined flour has some small fortification added, to make people think it is "good for you".

It is insignificant when considering B6 toxicity which is pretty uncommon and only occurs when over 100mg is consumed daily for long periods of time. Some doctors, use the upper limit of 200mg a day of B6.

I don't think there is a reason to use more than 50mg a day for most people and situations.

This is good, that you are weaning off the clonazepam. In your first posts you said you were taking 1mg twice a day.

Klonopin comes in disintegrating tablets that start at .125mg and up. This should help you wean off more comfortably when that time comes.

Klonopin became very heavily used when Valium's patent expired. Many became very habituated to it, and I've read it can take 6mos or longer for a taper completely off.

Elavil is not toxic in the small doses used for PN. It can work at 10-25mg a night. There are some anticholingeric side effects, which males with prostate issues might not be able to tolerate.
Elavil (amitriptyline and its active metabolite nortriptyline) are the only antidepressant (TCA type) that have shown some use in stimulating nerve growth factors. Hence, helpful for damaged nerves.

This has been an interesting and informative thread, thanks for everyone's contributions. However now I am concerned about the gabapentin I am taking for the PN. I would not be able to function without it though, so does that make it worth the risk?

There are not many "risks" to gabapentin.

Other than it stops working for many, or only works for 30% or so. (according to studies).

The major risks with it are having an accident or falling because you are sleepy or impaired by it.

Thanks , Sally & mrsD:

I was told Elavil as well as Gabapentin can cause permanent nerve damage, especially if you get swelling (Edema) - I won't take anything that has even the slightest risk of that. That's just how I am.

As for the "added B6" - yeah, I think it's added on unhealthy foods to make them appear healthier. I'll still keep my distance from them though -as avoiding them might help me manage my weight anyway. (I'm just over 6 feet and weighed nearly 285 pounds just a few months ago. I'm now 240 pounds and still have a long way to go.)

For a very short time when I was suffering with a prostate infection -I had upped my Clonazepam to 2 MG per day, but that was only for about a week and a half. I cut it to 0.5 a day -then upped it again to 1Mg a day after the PN pains hit.

I really hope to be well enough to be off of all drugs soon. My plan is to work with my doctors to wean me off of it as my PN pains decrease.

I was asked once in group therapy - that even if my PN pains faded out - what would I do about my anxiety? Would I still take the Clonazepam?

My answer to that is no. I realize that anxiety is uncomfortable and aggravating at times but it's nothing compared to PN -or drug dependency. Anxiety attacks pass -I know this. So if I get anxiety in the future -and I'm sure I will, I'll just weather the storm -it will pass and I'll be glad I can deal with it in some other way that does NOT include meds.

I'm an artist and author, so I have some work that keeps my mind off of stress and anxiety most of the time. However, some other sources of stress are hard to avoid and stress for people with PN usually equals pain - at least for some of us, some of the time.

On a personal note that I'm sure some people here can relate with -
I have a spouse that nags quite a bit, and if you've been in a relationship with a person like this for years, the stress of it takes its toll on you, especially if they drink alcohol a lot. ...Basically, even for men, verbal abuse can stress anyone out if exposed to it for years. Though on her behalf - I'm sure that living with someone mentally "compromised" isn't easy either. LOL

That noted, I recently learned to humor through most of the arguing and such -to a point now where this kind of thing doesn't bother me much. I would think this mental transition needs to take place if we are to keep our minds healthy and free of anxiety.

In fact, just knowing that anxiety WILL pass in of itself will be enough for me. :D