Vitamin B12 and Neuropathy

Posted by lorirenee1 @lorirenee1, Dec 9, 2019

I went to my Neurologist and saw the nurse, because my neurologist had to cancel all her appointments. The nurse went thru all my blood work, and said my B12 is way too low for someone with Neuropathy. She repeated that B12 test, and again it is low. Because it is in a low, but normal range, 2 neurologists, 2 pain specialists, and 1 primary care physician of mine, did not catch that it was low. Only this nurse did, and now I need a week of daily Vitamin B12 shots, and then weekly, for a month. If you have neuropathy, B12 level should be at least at 400. Mine is at 185. I am praying Vitamin B12 helps. I really know nothing about Vitamin B12. Just found out mine is way too low for neuropathy. These doctors need to read the actual numbers, not just the highlights of what blood work is out of range. Maybe this could have been caught 2 years ago. I don't know if Vitamin B12 will help, but I am giving it a try. We all go thru so much.... Lori Renee

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lorirenee1 | @lorirenee1 | Dec 29, 2019

In reply to @wisfloj "Looking forward to your Naltrexone 'summary' Lori. What is the dosage right now? Easy to get..." + (show)

Hi Joanne, How are you? I hope you are doing ok. I know how hard it is, believe me. As far as the Naltrexone, I just raised my dosage to 4 and one half milligrams. I have absolutely no side effects that I can feel at all. I had to make a few phone calls, but I lucked out, and found a compounding pharmacy about 20 minutes from my house, in a Walgreens. Naltrexone is not covered by my Medicare, but not that expensive, thank God. About 35 bucks for a month. The last 4 days on it have definitely been an improvement to my pain level. No doubt about it. But it helps only with pain. It does not help with other crazy foot sensations, like toes that feel stuck together, or too wide spread. My feet still feel weak, and I cannot walk too much. I do foot exercises daily, and try to walk, daily. The best though, is that the pain level is definitely better. Probably from about a 7-8, to a 3-4. For me, that is like a miracle. I will keep everyone informed about the Naltrexone after at least 3 weeks or so. I am praying that less pain continues. Be well as you can, Joanne. I know our struggles. I hope your bro is ok. I hope the rest of your family is ok, and that your daughters new marriage works well with her. God bless, Lori

lorirenee1 | @lorirenee1 | Dec 29, 2019

In reply to @goldleaf "As we seem to be in the boat, so to speak, I might give you some..." + (show)

@goldleaf

As we seem to be in the boat, so to speak, I might give you some of my understanding of stress. OCD is a stress disorder. Almost all so called mental disorders that doctors have names for, are stress related. As I understand it, genetics are to blame for this. Anxiety is an is in inherited problem in a lot of people. Here again, doctors have no cures for they dish out different named tranquilizers. I have had experience with that crap too. They never helped and gave me more problems than I already had. I was diagnosed with PTSD. I will tell you of some similarities and some differences between you and me that you have mentioned so far. The day I had surgery, the surgeon was suppose to fix a rectal tear, instead he permanently damaged the nerves in that area. When I went home that evening, both my feet started to feel weird. By the next morning they hurt like hell. Peripheral nerve damage. PTSD is a stress disorder and now this doctor just made that condition worse. Here is one of the differences between you and me and I find this odd. Most of the people that I have read about that have been diagnosed with Central Sensitization Syndrome are women and I am a man. I am 71 and have been married for 42 years. I have two sons and 5 grandchildren. I use to work for a telephone company and mostly climbed telephone poles all day. It was the area that I worked in, Watts, Compton, that brought on the PTSD. I had too many fights with the people that lived there. I had to retire to early from my job. I was in a war and I didn’t even have to leave the U.S. I don’t know if you have been really diagnosed with Central Sensitization Syndrome and since I have been unable to carry on a real conversation with someone who has this, I will give you some of my inSite on how this affects me. If you talk to any doctor, and I have had to talk to way to many, about anything that bothers you, such as racing thoughts, or pains throughout your body, they jump to a psychiatric or a medical problem diagnosis. This is so dumb. I made that mistake a couple of times. These guys shouldn’t be doing this. This has to do with the way they are trained I have been told. I call them the 15 minute wonders. I learned never trust anyone who does this. With Central Sensitization Syndrome, a lot of what goes on mentally and physically, is driven by all the side affects of hypersensitivity. In reality you don’t have those medical problems they come up with. I am not saying you don’t really have medical problems, you probably do, but not those they come up with. I have a couple of real ones. I was born with Thyroid disease. This is probably why I am in the company of so many women. Women tend to have this medical problem more then men. My mom had thyroid disease. She had Hyperthyroidism and I was diagnosed with hypothyroidism. Again a genetic problem. Again no cure and just a pill to control it sort of. I don’t know if you have diagnosed with this but from what I have learned from the neurologist I have been seeing and the research I have been doing on my own, this plays a major role in why you end up with Central Sensitization Syndrome. It makes you predisposed to this. Thyroid gland controls your central nervous system. I know it’s not that simple but if you understand that when some part of you is not working right, it affects the rest of you. The snowball affect. I am not a doctor so I won’t use medical terminology. The thyroid gland produces hormones that go to a couple of places in your body. One of them is your pituitary gland and one is the central nervous system in your brain. The pituitary gland produces endorphins. The endorphins are necessary in respect to pain. They help your body deal with physical pain. In my case and the fact I am lacking in that production, I have started out in life being more sensitive to physical pain. When it comes to your brain, endorphins affect your pleasure center. Too little of this will make you depressed too much will make you aggravated. Snowball is a good term for all the crap this can cause. It affects who you are and how you deal with life. Then imagine if you hyper sensitize that. I see you use meds. I can’t. I started noticing back when the psychiatrist I was seeing was trying those meds he was prescribing and all the bad reaction I was having, it was chemical sensitivity that was taking place. After my operation, that problem got worse. I could no longer use antibiotics and I had developed problems eating foods I could eat before that surgery. I had developed digestive problems. It took me a long time to find out what was really happening. Doctors missed all of this. The next piece of crap was pain meds. Because I was having digestive problems the idea of these idiots was to use a pain patch so I didn’t have to put the pill into my digestive system. The fact that this crap goes into your digestive system anyway I guess most of been too much of a stretch for these guys to get. I was prescribed the Fentynal patch. Talking about a real mistake this was it. This is the worse thing that you can do to someone like me. The only reason I lasted so long on this drug was because I was only using 25 mg. The other was my chemical sensitivity. I only needed a small does to deal with my pain. The operation took place in 2006 and I started using this crap in 2011. It worked for awhile. Then in November of 2016, I had a pancreatitis attack which nearly killed me. I never had a problem with my pancreas before and after a lot of tests and exploratory procedures, I still didn’t have one. The doctors were stumped. I wasn’t. Trying to deal with these guys was useless. The result of that attack and the resulting starvation of an entire year, my pancreas had stopped working, made me research this problem on my own. It took about 1/2 hour of my time to come up with the answer. Fentynal was the cause. I was only using two meds at that time. Thyroid med and Fentynal. Thyroid med wouldn’t do this but after looking up what Fentynal can cause, it was plain to see. I was finally referred to a gastroenterologist who is a pretty bright guy and he agreed with my findings. I had to detox from that crap and that was very painful since as I found out the hard way, I could no longer use any pharmaceutical meds. Chemical sensitivity. Three days into the detox and my pancreas started working again. Here is a weird part. The pancreas prudence to things, insulin and an enzyme that helps in the absorption of food nutrients. It didn’t stop the insulin production just the nutrient part. I started to gain my weight back and some of my health and I thought I was on my way back to some recovery when I was smacked in the face with this new reality of Central Sensitization Syndrome. I am sorry, I have already told this story to too many people already and sometimes I can’t help telling someone else. It is boring to lot of them so I will apologize. I did keep a lot of the gory parts out though. The doctors I see now know all this now and it is real. The snowball affect and those who caused to happen know to.

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@goldleaf Hi. I am responding to what you wrote, but barely know where to start. I know that although we have had different illnesses over the years, the Central Sensitization Syndrome is at the core of our problems. I am a 68 year old woman, and I too, have Central Sensitization Syndrome. Our brains amplify things that people who do not have Central Sensitization have reaction to. Nerve destruction is always part of Central Sensitization Syndrome. The brain amplifies all the pain involved, and it is impossible to turn down the brain effects. Side effects of drugs become major problems. I too, can barely take medication, especially certain families of drugs, like stomach meds. Light and too much noise can bother me to no end. Also Central sensitization. We become hyper sensitive people, because our brains amplify everything. Like a radio turned on too high. Unlike you, my thyroid is fine. But I know the things that I have mentioned are all due to an amplified brain. I do think many docs know about Central Sensitization, but like you said, in 15 minutes, they do not have time to talk about it. I actually understand this, as there are so few meds to help with it anyway, and most do not work very well. You may want to heavily research Low Dose Naltrexone, as it is not exactly something that directly works as a med, per se. What it does, is shut down your opiate receptors for about 4 hours or so, and in so doing, your body reacts by raising endorphins substantially. Specific endorphins help with pain. In other words, the Naltrexone forces your body to work in a new way. Of itself, it does nothing. I have been on it now for about 4 days, without side effects, and my foot pain has gone down substantially. Anyway, I admire your intelligence and tenacity. Truly, I feel that docs just do not have enough time for us to do their jobs correctly. The only reason I am on Naltrexone now, is that I suggested it to my pain doctor. So many times, I have done the work, and they listen. So many times, I have asked that they order a test, and they listen. Do we pay them to listen? I thought we paid them to think. There are some good ones, too. When my PCP retired, I knew I was in for trouble. The man THOUGHT. Anyway, best of luck to you. You have had a journey that most people will never even understand. God bless. Lori Renee

goldleaf | @goldleaf | Dec 29, 2019

In reply to @mcgatt "What crap are you talking about" + (show)

The crap you just wrote, my phone is miserable interpreting my words. What conspiracy? Where in anything that I said was an idea of a conspiracy? Just curious as to where you are at in this world.

John, Volunteer Mentor | @johnbishop | Dec 29, 2019

In reply to @goldleaf "The crap you just wrote, my phone is miserable interpreting my words. What conspiracy? Where in..." + (show)

@goldleaf (not speaking for @mcgatt) I took this for a joke. Sort of like a bumper sticker I saw years ago - "Help! The Paranoids are after me."

iceblue | @iceblue | Dec 29, 2019

In reply to @johnbishop "@goldleaf (not speaking for @mcgatt) I took this for a joke. Sort of like a bumper..." + (show)

Time will tell. Humour doesn't always translate very well online without the use of emoji's. That's one of the shortfalls I've noticed with this site.

John, Volunteer Mentor | @johnbishop | Dec 29, 2019

In reply to @iceblue "Time will tell. Humour doesn't always translate very well online without the use of emoji's. That's..." + (show)

Indeed @iceblue but I wouldn't put it on the site. One person's humor (words) may or may not be funny for someone else. I have had my share of misinterpreted sayings/phrases that I thought were funny at the time. I try not to make the same mistake twice ☺

goldleaf | @goldleaf | Dec 29, 2019

In reply to @lorirenee1 "@goldleaf Hi. I am responding to what you wrote, but barely know where to start. I..." + (show)

@lorirenee1

Jump to this post

Thank you for your response and time. To actually have conversation like this is refreshing. You have answered a question that I have been trying to research. That was if people who hand Central Sensitization Syndrome also had thyroid disease.I have been told that my thyroid disease affects this syndrome indirectly. In my experience that is so untrue. The neurologist agrees with me on this. So now I am even more puzzled. I will give the last example of this. Once a year I have the blood test for this problem. This recent test showed I had to high a level of that med in my system. That happens every so often. My primary doctor decided he would lower that dosage. I was taking 150 mg and he lowered it to 112 mg.It takes about 3 days before that process really takes affect. It was the affect I had a problem with and the subsequent pain it caused me that I paid a price for. I woke up in the morning and my world became a very ugly place. Anger and rage was part of that. I didn’t know what the hell was happening to me. By the time I made it to my neurologist, I had started to calm down. It took about a month before my life became livable again. The doctor and I talked about this for awhile band he was hoping that my body would become adjusted to the new dosage. That sort of happened. My body did a better job at that than did my mind. I found myself at an even high sensitivity level if that is possible. The other problem is I get muscle spasms on an off ever since I detoxed from that Fentynal patch. They happen everywhere and at odd times. Sometimes for no reason at all. Usually they only last for a couple of minutes and no longer than a hour. After that med problem and within that month, the muscle spasm from hell hit me. It went from the middle of my back all the way to my foot on my left side. I was crippled by it. Pain from hell. It wouldn’t stop. I had to make an emergency visit to the neurologist and he used the injection I get for my nerve damaged surgical site, to relieve that situation. Here is where my chemical sensitivity played in and that increased sensitivity blew me out of the water. Up until this point I could take two injections at one time with very little after affects. This time I went straight to hell. It takes about three days after those injections to feel some of the aggravation the steroid causes to the nerve endings. This time it felt like someone just lit me on fire. It took about another week before that to calm down. Now I am more cautious about anything to do with meds. I don’t know where I am at in that situation anymore. I am still in this hypersensitivity state. I will look into your suggestion about this med and thanks again for replying.

Leonard | @jakedduck1 | Dec 29, 2019

@lorirenee1
Hi
Normal B-12 is between 200 & 900. What level does your doctor or nurse recommend it be at.
I know B-12 helps numerous things like nerve & blood cells and helps prevent anemia. It also helps make DNA etc.
I know a man in Canada who is able to control his seizures with B vitamins alone.
Anxiously awaiting to hear what your nurse or doctor has to say about the proper level of B 12 for neuropathy. I may need some too.
Jake

goldleaf | @goldleaf | Dec 29, 2019

In reply to @johnbishop "@goldleaf (not speaking for @mcgatt) I took this for a joke. Sort of like a bumper..." + (show)

I am sorry but I found it weird. I just spent time doing something that I not use to doing and rarely do. When I am in that thought process, there is no humor. Since you have shed some light on what this was about, no big deal. There is still some sarcasm and humor left in me.

mcgatt | @mcgatt | Dec 29, 2019

UC neuropathy is caused in my estimation play all the meds I took all my life sir and neuropathy is also called caused by these devices or users to communicate because of electricity has brought many diseases that's why