Vitamin B12 and Neuropathy
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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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
@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
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.
@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."
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.
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 ☺
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.
@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
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.
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