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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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Thank you goldleaf for describing your ordeal in such detail. I have experienced pain like yours but I could not put it into words as well as you did. This condition we have 'sux' and seems to be quite capricious. I have tried to correlate the good days and the bad days to anything I did or ate or took ... so far, I haven't found anything that triggers good feelings or the bad ones - it seems to be random. If my nervous system is dying and going 'haywire' and sending out false messages, I wish it would engender false feel-good sensations instead of painful ones.
Re: Comedy - I have found by watching entertainers and by being one that: when people are expecting comedy, they laugh at everything we say and do - when they are expecting something else (medical advice perhaps, or singing or dancing), comedy takes them by surprise and they have to mentally shift gears - they don't 'get it' so they don't laugh until later when they have a chance think about it again. Peggy
You are so very right on that observation. I wish I could spend more of my laughing. I wish I could spend more of my time doing something other than what I have to deal with. I find listening to comics who are in some pain themselves, make me laugh the most. They seem to have the best and most down to earth out look on life. For some reason, I can always spot people in pain.
Hey Leonard and Lori Renee
For what it's worth...while going through all the motions to find the underlying cause of my SFN diagnosis, my B12 was found at 219 and methylmelonic acid levels off. My Neuro sent me asap for injections every 2 weeks and retested me every 3 months until B12 reached 535. At that point he was satisfied for me to take oral B12 daily. He will continue to monitor unless I feel the immediate effects of B12 slipping earlier.
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3 ReactionsIt helps the world go round. 👍🏼
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2 Reactions@rwinny
Thanks for the information
Jake
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2 Reactions@rwinney Hi, Rachel, Did you find that raising your B12 to a better level helped your pain in any way? I so wish my docs would have found my low B12 two years ago, when my neuropathy started! Thanks, Lori Renee
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1 Reaction@goldleaf The only time I was ever in a state of severe health problems, before my neuropathy, also had to do with a medicine reaction, that kind of snow balled into a giant mess. (Notice that we have both chose the word "snowball" to describe extreme medical situations.) My extreme medical situation started innocently enough just by using an anti inflammatory for joint pains after my son was born. Over time, I had such bad esophogitis from the anti inflammatory, that I had to take various stomach meds for the esophogitis. They landed me in the hospital, sicker from the drugs, than the illness itself. So I know of the extreme reactions to meds. Central sensitization often causes extreme reaction to meds. In case you are interested, there are many docs on youtube that talk about central sensitization syndrome. I have listened to many, and some are outstanding. Sadly though, knowing about it does very little to help the treatment. All of the typical nerve damage drugs are used, along with a few anti depressants. So knowing what to call it, does not impact the treatment. I really think the whole area of treating chronic pain is very, very, limited. I know that whatever I can use to distract myself helps. But often the pain takes precedent because of the severity, and then the ruminating begins. This whole neuropathy forum is about people looking for answers. God bless all of us in our quest to feel better. We learn more from eachother here, than from our doctors. Take care, Lori Renee
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1 ReactionI have the same thoughts on this as you. I see a lot of people on this site that are looking for answers and some kind of relief. I have always tried to find solutions to my problems in dealing with life situations and most of the time I have been successful. This problem just has way to many variables to solve. If I was to go about this practically, I would need a team of very experienced doctors, an expert in each field that applied to my medical problems. Then there would have to be a doctor who could talk to these doctors and organize an filter out what was necessary information and what was just not going to be of any use. That doctor would have to spend time listening to me as what symptoms I was experiencing. This alone is even confusing to me. If you look up those medical problems, the same symptoms show up in all of them. You really can’t tell which one is causing what. That is just to weird. There are no real medical tests for what I have, so how would you determine what is going on? In my case, my chemical sensitivity started before I had that surgery. One thing I have realized in my case is what ever was happening before Central Sensitization, has carried over and those medical problems have been hypersensitized. I never really noticed any problems dealing with my thyroid disease. Now I do. The chemical sensitivity has become unreal. Since I have read the replies I have gotten, I see that other people have had their senses affected. Mine are ridiculous. Light, hearing, smells,skin, touching something and even cognitive function are mine. I never experienced anything like that before. Just going to my neurologist office and having someone start talking or reading a newspaper and changing pages, will drive me up a wall. I have to wear sunglasses anytime I go outside and sometimes that doesn’t even work. My eyes start to hurt like hell and I get severe headaches. I never use to get headaches. I have worked outside most of my life. It never bothered me. One things that pisses me off is the lack of personal freedom I use to enjoy. Now I need to depend on my wife just to go somewhere. I don’t drive anymore. Not because I can’t drive but because I can’t go to the DMV to renew my license. Too many people, too much noise. I have tried three times and it causes too much stress just being there. The result of that stress are muscle spasms for three days and they are excruciating. My life now consists of a two a day walk with my dog. I can usually do this for about an hour a walk. Yes my feet hurt but they hurt worse if I just stand still. I find that doing nothing is more painful than doing something. I exercise 7 days a week. I have been doing that all my life anyway and I use to play different sports will going to school. Weight lifting was something I did all the time. I can’t do that anymore. I have found other ways of exercising, like pull-ups to do the same thing. While working for the telephone company, I blew out my knee while climbing a pole. I had to eventually have a joint replacement done. I need to exercise just to be able to maintain that. I will bring up something that has crossed my mind and I have experienced maybe so of you have. If you had a medical problem an need to go to the emergency room, would you? I won’t. They can’t help me for a lot of reasons now. They wouldn’t understand how to go about it and would cause me more problems. Again that is just me and I wouldn’t tell anyone to follow that idea. I am a realist when it comes to my future. While I see other people looking for answers and believing in something will come along to resolve this, I don’t. Too much confusion on just the research end of this medical diagnosis. I am 71 now and the natural aging process will not stand still while these people are doing their thing, and the body just breaks down. All the aches and pains that come with that will do me in. Just the stress that this crap is causing me now, non stop, will do me in. All realities. What I have decided to do is deal with it as long as I can. I have never been into using drugs. I was never an addict before I was made into one by doctors. I don’t plan in going in that direction ever again. I will have to decide at some point in this mess, whether I can tolerate anymore pain. Again this is just me and I have lived a long and very hard life, so I wouldn’t want anyone else to follow what I do or say.
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2 ReactionsThere is a lot of pain, and anxiety on this "thread." There is also evidence of people determinedly searching for answers. I do not claim to know the answer to the question of the relationship between B12 and Neuropathy but I honestly think that some people are putting too much reliance upon B12 as a clue as to why they experience their neuropathy like symptoms. B12 defficiency is rare, being on the low end of the normal range for B12 levels is NOT the same as a B12 defficiency. Some of the dose levels cited on this "thread" are horrendously high. Luckily B12 is water soluble so well over 90% of your B12 supplements are excreted in your urine and harms your wallet not your body. Statistically you are more likely to need to drink more water than to need mega doses of B12. Having said that IF you actually do need B12 supplements you should take it in a form that is free of impurities and readily bioavailable. There are some excellent articles on B12 on HEALTHLINE.COM among other sites but it might be that instead of focussing on B12 some of us would be better served by reducing our anxiety levels and increasing our overall wellbeing? This is more likely to be achieved by exercise, diet control, meditation and mindfulness than by any "magic bullet" be it a megadose of B12 or a so called "nerve tonic."
On a lighter note some 70 years ago in the East End of London, my Aunt who,suffered from "bad nerves" was told by her Doctor to drink brown ale (for nutritional purposes.) She did....and she lived to be 95 ....because of the ale or despite it!
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5 ReactionsWell presented thoughts. I enjoy reading your posts although they are at your expense and I'm sorry for that. It's always interesting to learn and understand others perspectives on their health issues, meds, Drs, etc... The more we open our minds to hear others concerns, observations and experiences, the more knowledge we may gain. Whether it's useless to us remains our decision but so productive to keep doors open and not closed. Your posts have brought to attention some issues that I struggle with such as sensitivities to light sound smell. Of course I have mitigating circumstances, like most, which blur the lines... cornea disease, chronic migraine, small fiber poly neuropathy and a handful of bulging/herniated discs in neck and back. Soooooooo, there you have it. Crap!
Anyway I just wanted to say thanks for sharing your story, allowing me to learn and continue my acceptance of circumstance. Have a nice day and I hope you enjoy your dog walking! Take care.
Rachel
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