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Vit B12 problem..needing some help!
Hi, I'm glad I found this forum and am hoping this will help me out with my condition. I had a Roux-en-Y in 2002. I was diagnosed with Vit. B12 Deficiency in Feb. 07, which, I found out later it, I was deficiet for over 2 years time. I was put on Cobalamin injections once a day X 5 days, then once a week, then once a month. This has been increased to every other week. I also take the Methyl 5000 mcg SL tabs twice a day for supplement, which has helped tremendously since beginning.
At this time, I am experiencing a LOT of CNS problems and would like some input for some of your members. I am especially needing this input as I have found many of the "specialists" are way behind the times with this syndrome. I cannot find a specialist who knows how to treat me and am developing more and more symptoms, thus feel emotionally and physically like I am slowly going down the 'tidy bowl drain'..... I don't want to end up paralyzed,which I know can happen...you see, I am a RN with 2 Master's degrees....and even I can't find the appropriate doctors.....Lord help the average citizen. This has been an eye-opening experience for me.... I have an array of symptoms that hit me everyday, sometimes these 'come and go' when the day is a bad day, like when I am extremely tired out, as I am still working full time and the ward/job is very physically tasking:
It will be a Blessing to have the emotional support from others who have experienced the same symptoms, while I would never wish this on my worst enemy, at least they would know it's "not in my head" and I am making it up ) Please excuse my sense of humor, by the way, it is my coping mechanism. The more I'm stressed, the more it flies! My motto has always been: If you don't laugh at life, life will laugh at you! and hey, I'd rather be the one laughing! Nice to 'meet' everyone! |
Hia there.
Just read your message and felt compelled to answer. I'm not B12 myself but my wife is. She's been getting treatment since August 2006 after suffering symptoms since her teens, at 25 yrs old and after our 2nd child her health hit rock bottom.She was told she had MS after a series of tests (none of these a stand alone B12 level) this was in 2001. She has partial vision right eye, partial paralysis right leg , at time of starting treatment she had massive neuralgia pain down right side (electric shock pain), debilitating fatigue. Right on the time of menstruation she would have dizzy spells and had started passing out regularly. She would go cold and clammy and shake uncontrollably, this would last perhaps an hour or two and she would have to rest at least 24 hrs to recover enough to be allowed out of bed! We were lucky enough to find our present doctor who's been fighting for a change to medical diagnosis in Britain and hopefully the world. He sent for B12 test and it came back level 175. My wife's injections were daily for about one week, then every other day for about one month before going to twice a week, then once a week then once a month.Early in the treatment the difference was amazing, 60% reduction in symptoms at week one of treatment and some regain of mobility at one month.Whilst on once a week we both noticed her symptoms would return at day 5 (mood swings, fatigue, mobility probs). We voiced our concerns but treatment had to drop to once a month to follow the set pathway of care. We have noticed a decline in her health and she recently was told could go back to twice a month injections. My personal view as a layman (but expert as an eyewitness!) is that she dropped to once a week too soon. Injections should have gone to every 5 days before weekly, then 10 days before two weekly etc. and only changed when my wife felt strong enough. This is a condition largely diagnosed on symptoms so why can't the symptoms of recovery be trusted when considering a reduction of medication. You don't take sleeping tablets away from an insomniac after they've had one week of normal sleep. You don't take insulin away from a diabetic after one week without a hypo attack! (imagine the lawsuit on that one). Why should it be any different for B12 sufferers? Sorry to rant on so much, I ought to climb off my soapbox and get to the point. On reading your story, the injections have fallen off too soon, therefore your symptoms return because your body can't utilise the sublinguals for anything other than "a quick fix". To aid your recovery the injections need to be more often for a longer duration, until you feel well enough to reduce the time between them. Remember that more chronic conditions are going to take longer to repair. B12 is used by every cell in the body and needs it as much as it needs water or oxygen - that means every cell in your body has been starved and needs to repair - this is going to take time and the recovery will be in peaks and troughs so you've got to ride out the storm every so often. Please don't take no for an answer from your doctor on the regularity of your treatment. Beg or threaten, whatever works. Put it to your doctor they need to read up on this condition. There's a b12 support site in Britain that's got some great info and there's a professionals section so doctors can find out a pathway of care that works really well for most patients. Ask your doctor to look on it or join it yourself and sign up to the professionals part if it will let you, print it and show it to your doctor and ask for that level of treatment - you deserve it. good luck and God bless. Also, one final thing. It's worth checking your family history. If you didn't know already, this is genetic and 70% of time runs with females. Look for history of anaemia, any neurological condition, altzheimers, behavioural disorders, depression and psycological disorders. If you have kids keep a close watch for early symptoms and signs. My wife has had on/off anaemia since the age of 15 as well as depression and mania. If patients can fight this together we can force the doctors to listen and to follow their medical code which is first and foremost to care, and to share info with collegues. Sorry again to sound off so much, I'm not a nutcase (yet!) but am very passionate about this topic as it's changed my wifes' world and given her hope for a quality of life she could only dream and pray for until recently. If you answer me on this one I promise the next will be much shorter! Matty |
Good for the doctors. Diagnosis and more aggressive treatment than most.
Matty: It is very unlikely that your wife is not getting enough B12. That is frequent enough for almost everyone to rebuild stores quickly. It is not true that the methylcobalamin RN is taking orally is only a quick fix. What she is doing is more likely to fill her stores with usable B12 (methylcobalamin) more efficiently, and in addition to being as good or better than shots, the long-term lab results are usually better with at least 1000 mcg oral B12, even the less efficient forms. Regarding symptoms, it is very common for people who have had significant nerve damage to experience extreme fatigue and temporary increases in symptoms (even new symptoms) as the body works on that particular area. RN: Please read the above regarding common symptom increase during healing. Also the use of methylcobalamin (YES! Good for you). And if you are depressed now, and weren't before, it is likely that your body is working on that area now (much better than a few years later, as in my case). You may be on a fast track. I hope so. Both of you: Please read my website if you haven't already. rose |
If you want to continue a discussion of the above, please continue in this thread. That will make it easier to keep all of the information together, which will be easier for me, and more helpful for you and others.
rose |
Thanks Matty and Rose for your responses. Matty, I'm sorry to hear of your wife's experience. What a scare for her and for you! I've done a lot of research on this since I was told I have Vitamin B12 Deficiency. I was amazed that there is not a whole lot of up-to-date treatment plans available, nor are their doctors that are up-to-date on the treatments. This deficiency attacks our body in such a weird fashion that in many times, it goes undetected by doctors, or is misdiagnosed for years. The longer we go without the proper treatment, the longer we have a potential for permanent damage.
My left arm feels like a knife is stabbing me at times. It scared me when this slowly started in my right arm also. Getting the doctor (my neurologist) to listen will be hard. He believes my left arm pain is from a torn rotator cuff and a pinched nerve in my left elbow, not the Vit B12. He doesn't have an answer why it is effecting my right arm also. Matty, don't apologize for a 'lengthy' post! I didn't find it too long, in fact, I enjoyed reading your post and the vit. b12 website was very informational. Thanks for sharing! I know what you mean about decreasing the injections too soon. I about died when my new doctor wanted to decrease my cobalamin injections from every other week to once a month.....I put my foot down big time! If nothing else, they need to be increased! I am so wasted by the time I get home from work, I am not worth a penny. If I sit down on the couch for a minute of two to talk to Bill, I'm out like a light for hours on end. Rose: where do I find the "Please read the above regarding common symptom increase during healing" I really appreciate the help you are giving us. |
Another story of doctor not understanding enough and patient is suffering...
Well just to share..RN4Veterans... my wife had same symptoms for a while now ....all those you mentioned below plus heavy/long periods . I think it's been more than 2 months now she has been taking methyl B12 ....started with 1000mcg then increased to 2000mcg per day as doctor said she is malabsorbing. This site was extremely helpful in getting more info. about b-12 experiences and special thanks to rose. It's very surprising and sad that not enough research has gone into b-12 , may be because the treatment is simple and cheap so it does not fill up the bank balances of big drug companies !! But to come back to point , my wife symptoms has not gone away in last 2 months or so ..she feels depressed irritated as she used to do before in addition to that sometimes she feels weird ...she cannot explain it . Overall I think her body resistance has increased ...slight improvement but not much . May be she has been deficient for couple of years now ..so it may take more time ..don't know ?? But it's always good to share experiences ..that's how we can learn more. Good luck. |
RN,
Sorry I wasn't clearer. By "the above" I meant in my reply to Matty. Quote:
Did you mean my website? If so, I'm so glad you found it helpful. Individuals are different, but I also had a lot of problems with my shoulders and arms. They took turns being the worst for a very long time, and one became frozen. They say a frozen shoulder doesn't recover if not within the first year, but mine took more than two. As with many of my areas of damage, it took years but finally resolved (or nearly so). rose |
Med,
Yes, the problems have probably been developing for much longer. And repairs can continue for many months or even several years. Hang in there. A couple of months is a very short time. And, in fact, it is common for the body to get down to working on some of the long-term serious damage months into treatment. rose |
Med Help, I can relate to your wife's depression and feelings of 'weird', because the symptoms are overall weird in themselves! They can come and go....hit with such intensity in an extremity then feel like it is going to spread to other extremities, then resolve. Like I said...weird, then hey...the doctor looks at you like "wow....she's a nut case" and I'm not one to take that from anyone...much less a doctor, thank you :o)
Rose, you don't know how much hope you have given me with your explanation with: temporary increases in symptoms (even new symptoms) as the body works on that particular area and Individuals are different, but I also had a lot of problems with my shoulders and arms. They took turns being the worst for a very long time, and one became frozen. They say a frozen shoulder doesn't recover if not within the first year, but mine took more than two. As with many of my areas of damage, it took years but finally resolved (or nearly so)..... I have put my Left arm pain down to incorrect treatment of the Vitamin B12 Deficiency, thinking that I should be getting more of the supplement. Why else would I be developing more and more problems? I hadn't run across any literature or research on this anywhere and was scared to death that I was going to end crippled. That is why I started myself on the SL supplements twice a day. How long did it take for your arms to recooperate? |
I was badly injured, and my shoulders were affected early, before I had any idea I had a problem. Fortunately, my regularly impinged shoulder nerves eventually stopped doing that, and the frozen shoulder recovered, BUT it took at least a few years for my shoulders to cease being a constant problem.
That does not mean that anyone else will have a timeline like that: types of damage, extent of damage, recovery, and timelines vary tremendously from person to person. Unfortunately, very few docs know a thing about the process of repairing nerves. Those who do know tend to concentrate on the results, rather than the process. That's understandable, but it sure does leave almost all patients in the dark. Best to you, rose |
it's a long road
Hi there,
This is my first ever to post to anyone, I felt I must as I am just as frustrated too. I found out the end of 2003 that I was B12 def., actually pernicious anemia. I started taking B12 shots Jan 2004 at home myself and will for life.Unfortunately, the damage was already done. I was 39 years old. I couldn't believe it! I already had peripheral neuropathy, carpel tunnel, tarsal tunnel, optic neuropathy and working on bladder dysfunction. Not to mention what it was doing to my memory and confusion, fatigue, etc. etc. etc. the lists goes on. Did anything get better.............NO. Does it with SOME people..........YES.Unfortunately, it did not with me. I thought I was from Mars cause I kept reading stories of people feeling like they could fly just from taking B12 shots! Well, I am happy for them. I had to quit reading articles as they were not helpful for me. I silently started doing research on my own, never mind different neurology care I have been under ever since. If you haven't been told already, you will be told..... B12 carries the same symptoms AND damage as MS except MS has a lot of help out there and resoureces, WE DON'T. If I sound angry, I guess I am, I am frustrated. This disease can tear a persons life apart as bad as MS and other diseases, yet, it gets NO WHERE! It makes no sense why doctors still do not know how to treat it. For the record, I hope you will not be mis led as I was, if you are B12 deficient and try to take EXTRA B12 shots, your body is NOT going to accept it, it is NOT going to do you any good. You will not absorb it. There are, as you know, different types of B12 def. If you have the same as I , you can not absorb it. Believe me, I have tried this, it doesn't work. It is July 31, 2007, 3 1/2 years I have been on the shots, my symptoms are worse, the neuropathy is a nightmare, today my neurontin was increased to 2100 mg per day plus starting Cymbalta for Neurapathy as well, not to mention the other 13 meds. I am on, thanks to B12:) I felt strongly that I wanted to post to you as I could understand your frustration and I have never done this before and I can only hope that somehow we can one day see a difference in our own doctors here in our own country that do know more on this disease. It is treated like the old TB days! If you search on the internet, as I did recently, I just typed in " doctors that specialize in B12 Deficiency", and blood disorders. I came up with a few. You may have some luck. I hope you do. Neuro's and Internist are usually the best with this although most are limited. If you can ever find an older militray medicine outside doctor, grab him:) They have delt with a lot of varities! Believe me.I am seeing only military doctors as my husband is in the service, but one day I landed in the hands of a " military medicine doc" that is usually only for them, he helped me so much and got me on the path to walking and off crutches! But,they work on the outside as well. I know this was long, but I sure hope something in this can be helpful to you. Sugar coating things is not going to help you. If someone would have let me known what I was heading for, I would have probably handled it better. It was very tough and still is. The best of luck to you. I wish you well. Hang in there! P.S. I chose "COMPLEX" because my docs. always say my case is always so complex:) lol, just like you say, I always got to try to laugh about this or I will go nuts:) take care! COMPLEX B) |
re: things getting worse at times whilst repair is happening
Thank you all for these comments of your experiences. My wife for the last month has had trouble with her mobilityagain, just when it seemed to be getting much better. Her tendon behind the right knee freezes, making it impossible to walk unaided. We've got a new wheelchair now after giving the old one away - we thought we wouldn't need it again. It's so encouraging to read your comments Rose, even if it takes two years to heal at least it is healing - my wife will be able to stand and walk down our hallway without bruising herself on doorframes, chair backs and cupboard corners at some point and it's great to know that.
Something to remember for all of us - people are saying they've been deficient for two years - I think you must remember this is a problem some people are born with. It takes vegans ( most of these will have the ability to absorb B12 ) twenty years to deplete their B12 enough to cause symptoms - so it makes sense that most B12 sufferers are 25 or older when their first serious symptoms start. If you think a normal B12 level is around 1500 + and most people who are receiving B12 have dropped below 200 - it's probably taken 20 years to get down to that level. Everyone will have different levels of malabsorption - meaning some people will take longer to get to these chronic low levels. In Japan - they treat anyone below 400 - 500 as defient. (By the way, no offense to any vegans reading this ! It's just a fact that the highest levels of B12 are readily avaible in meat - if you don't eat it and haven't been told to take a supplement it will deplete). I think it's really important to look back at early ailments for clues to this deficiency - before the level gets so low. For instance, as a child as young as 8 years old, my wife suffered lack of concentration, secret feelings of "not fitting in" and at the age of 15 became heavily anaemic and on/off depressed. It's worth ponting out, her Mum's B12 deficient aswell (diagnosed as Epileptic before discovering B12 deficient - B12 treatment has lessened the severity of her Epilepsy - go figure!!). I think she wouldn't have a great start in life if this is a familt trait - and if it's strongly genetically linked, surely the severity of the condition could get worse with each generation. With this in mind, my sons' B12 was taken and his level was 800 - at that time at school he'd been kept back in a catch up class but the teachers concerns led to him being referred to a Dyspraxia clinic ( another neurological condition!). We still haven't heard from the clinic - it's a lengthly process in Britain to go through the NHS - but our doctor suggested B12 sublingual at 500mcg per day. The argument is my wife was probably already chronic B12 when Daniel was growing inside her so he could have suffered development problems as a foetus - leading to a relatively low B12 and Dyspraxia. Taking the B12 has made a huge difference - his reading and writing came on leaps and bounds over a three month period - his teachers were amazed. Any body else noticed the family links?? |
Diagnosed w/ B-12 def May 2006
Rn; Matty, Rose and others;
Very interesting to read this thread; I fall in the category of "undiagnosed" b-12 deficiency for a long period; long story short - since the "progression" of tremor/balance issues (I was dx'd with Essential Tremor in Nov 2005), Neuro was calling for a complete blood work up to find something that might explain why I was getting worse as I complaining my lips had gone completely numb, followed by the tip of my tongue, end of my fingers, spots on my lower legs & feet and I had major sensory symptoms in various parts of my body. Neuro said bloodwork looked "normal". I was not satisfied and went back to my PCP (Internal Medicine) with test results compaining of symptoms and my partner noticed "cognitive" problems; such as simple recall or short-term memory issues. It was my Internal Medicine doctor who noticed my b-12 levels appeared "low"; at the time 218. He requested more blood tests and b-12 level came back at 177. Clearly, my b-12 deficiency could have been discovered the previous year! when complete bloodwork was called for my my then Neuro - I have been told it takes "years" for my tissues to get so depleted. I was tested and don't have Pernicious Anemia; it's metobolic - I no longer absorb b-12 from foods. In May 2006, I started b-12 therapy (cyanocobalamin 1ml or 10cc); one shot per week for 4 weeks; dropping to bi-weekly; then monthly; however, symptoms were worsening; doctor moved me to weekly shots of 10cc. I saw immediate results after each shot (tremendous engery!) where I'd been complaining of always feeling "tired" for over 2 years at that point. It took over six months of shots (I moved to .5ml twice a week) for the feeling to return in my fingers/toes and lips but I've got Peripheral Neuropathy caused by low b-12 for so long; we're not sure the nerves will be able to repair. I will keep reading this forum. I see a Neuro/MDS specialist with Emory Neurology (Atlanta) now for the movement disorder, ET - and I've been included in a b-12 study that being conducted by doctor in his research group (Dr. Evatt)......I also received the book "Could It Be B-12?" written by Pacholok, R.N. & Stuart, D.O. today - so am starting to educate myself as much as possible....I want to ensure I'm getting the attention to my b-12 deficiency and it's not being ignored because doctors are more focused on the Essential Tremor disorder.....BTW, was told in latest blood test results that I now have low Vitamin "D" (17); go figure!:grouphug: |
My Vitamin B12 deficiency was over 2 years and I was hoping extra medications would assist in repairing the damage. Don't get me wrong, I don't mean mega dosing with cobalamin, but definitely not lowering the dosage like the new physician was wanting to do! I knew that wasn't going to be in my treatment plan....I was definitely frustrated that I could not find anyone here in the states that knew a whole lot about this syndrome. When it come right down to it, the United States is way behind the times even in its treatment plan of cobalamin, the World Health Organization recommends giving Hydroxocobalamin because it stays in the system three times longer than cobalamin (J Pediatr. 1998; 132(1):121-4 (ISSN: 0022-3476) Andersson HC ; Shapira E Human Genetics Program, Tulane University School of Medicine, New Orleans, Louisiana 70112, USA) But I could not even find a doctor in my area that even knew what it was! They were wanting, instead, to stick with the standard treatment, which they learned in med school and not be open minded with any new method.
I've got the book by Sally "Could it be B12: an Epidemic of Misdiagnosis" by Sally M. Pacholok, R.N. and Jeffrey J. Stuart, D.O. They are husband and wife. She had Vit. B12 in the 1980's and they researched this and was amazed on the lack of information and lack of understanding and willingness to listen from the medical community. It is a very, very interesting book. Sally assists many people. I am interested in this B12 study that you are doing Ron. Can you tell us about it? Med_help, Complex,Rose,Matt and Ron, as always....hang in there, maybe one day, the doctors will finally hear our outcry and listen and start doing some research to assist us... |
Complex,
I can certainly relate to your frustration. I also incurred damage similar to MS, and have been coping with the fallout without the support. Some people only stop the damage but do not improve when they get the B12. But it still is possible to improve, and you would maximize your chances for improvement by taking the methylcobalamin form of B12. And, of course, making sure you're getting all other nutrients your body needs to have optimum opportunity to repair. I also wish someone would have told me what I was going to deal with. I could have planned and had it much better physically and financially, at least. I cannot speak to what is or is not going on with you. But my second and third years of repairs were probably the worst, and that's saying something because prior to that was bad. Wish we could sit and visit. rose |
Matty,
Many people are born with the seeds of severe B12 malabsorption later in life. And I am one who has family evidence of this. My mother malabsorbed moderately, I suspect my dad may have, I developed severe malabsorption, and two of my adult children developed severe malabsorption at a much younger age than I had. I spoke with a researcher, and he said "these things mutate." Also I have found written material discussing the increasing severity developing in some subsequent generations (as my family illustrates). I hope he will increase that B12 dose to 1000 mcg. If he malabsorbs severely, or is heading in that direction, that is a much better dose to insure he gets what he needs. rose |
Jon,
Thank goodness for your rare and wonderful doctor of Internal Medicine! It does take years to become deficient, unless one is doing lots of nitrous oxide or has some very unusual problem. What kind of B12 study are you in? What type of B12 are you getting? I hope it is methylcobalamin. Chances are good that your peripheral nerves will improve, unless there's something else going on to damage them. The regenerate quite well, but it takes time, and things may be difficult as the central nervous system gets used to the differing signals (since when nerves regenerate they do not do so in exactly the same way original nerves were). People who can't absorb B12 from food usually lack sufficient stomach acid. And, of course, if they progress to also lack intrinsic factor, they malabsorb from all but very large doses of B12. Lack of intrinsic factor is true pernicious anemia (not an anemia at all, as was thought in the 19th and early 20th centuries). Do you have copies of your lab results? If not, I suggest you get them and keep your own records from now on. It can be very important. |
RN,
There's been lots of research, and continues to be. The information just hasn't gotten to most docs (largely because so many editors of medical literature haven't been doing their jobs, and they continue to put out "information" that is decades outdated). rose |
Rose - yes, I have copies of my lab results; intrinsic factor is normal. Below is the info on Dr. Evatt that's available online:
Clinical Trial Vitamin B12 location and contact information http://clinicaltrials.gov/ct/gui/sho...57B27F?order=6 C.V. for Dr. Evatt http://www.sph.emory.edu/CRCA/graduates.html My Neuro/MDS (Dr. DeLong - which I've been seeing for a year now) indicates my ET is greatly enhanced by the b-12 deficiency. He was a proponent of getting it under control to better treat my Essential Tremor, though he's not yet ready to rule out early MS. It's amazing to me how debilitaing b-12 deficiency can be. Since intrinsic factor is fine and I don't have pernecious anemia - what's the next step to explain the malabsorbsion? Should I ask for more tests? BTW, I take the injectible for of cyanocobalamin; .5ml 2x a week....Jon |
Yes, B12 deficiency, when untreated long enough, can mimic MS very well if the patient survives that long.
Parietal cells should also be checked. Those two tests together show a high percentage of gastric (stomach) atrophy. They are not 100%, and the fact that your intrinsic factor test was normal does not mean that you are not experiencing atrophy and losing the ability to produce intrinsic factor. The appropriate terms for the anemia you mention ("pernicious anemia) are megaloblastic and macrocytic. Pernicious anemia is the lack of intrinsic factor. Most doctors do not know that, and when possible their patients must teach them :eek: . A large percentage of people deficient in B12 do not have anemia, and in fact they are at greater risk of neurologic damage. I'm confused. How can you be included in the study when you have had B12 shots? :confused: rose |
Quote:
Wow, your story is very inspiring. Your wife's improvement ... it's wonderful. And I know that it's not uncommon for B12 to be able to aid in recovery like that. I just wish I could convince more people. I agree with you that a daily shot, had it been continued, would have been helpful. I know that for me, I need a lot more B12 than many other people. If your wife was so very depleted, then it's not easy to get enough B12 back into all the tissue. It might be if you lived on a desert isle with free food and drinks and no worries... but in a life with any stress, well, in my experience the stress eats b12 up nearly as fast as I can take it. And for me, even 6 of the 5mg Methylcobalamin a day do not equal a shot a day. And on the worst days I have to have two shots to keep the peripheral neuropathy from coming back. So I very much agree with you, from my experience. I wish that doctors didn't get into these hard and fast rules about how to treat things. One treatment does not fit everyone. But that's what doctors tend to do. Darn it. (((((((((Matty and your wife)))))))))) |
Matty, you know what, I just LOVE your SORRY to rant paragraph toward the end. It says it sooooo well.
I had to come back and add that!!!!! (((((((Matty))))))))) |
Quote:
I've read your post twice.. and I can't see where you say how many shots a month you give to yourself. I know you may well have written it, and I just keep failing to see it. If you are having a shot a month or a week, I'm not surprised that you aren't feeling an improvement. I didn't feel much of an improvement, I mean a really significant improvement where my peripheral neuropathy went away, until I had tetanus and was giving myself one or two shots a day. :) |
Oh Matty, I so know how the bumping into door frames thing goes. I used to have black and blue marks, and I was always breaking things when I tried to carry them through a door way.
But now I can walk without falling in a room that's not totally brilliant with light. so that's a huge improvement. I sure wish you could have more shots for your wife... I'm sure it would help. And remember just being more sick is more stressful. Today I was bent over before noon.... that's nerve damage from the tetanus. But it's stress that activates it. I don't know how it works, but stress just does me in. Still, a year ago it took me months to recover, now it's taking weeks. (((((((Matty)))))))) And yes, re family links. My mom had pernicious anemia. ((((((((Matty))))))))) |
There are unusual individual conditions that apparently cause a very few to need B12 treatment constantly. That is not the norm, and in fact it is extremely unusual for a person to require shots nearly that frequently or to have rapid depletion from stress. But because of varying abilities to transport the B12 once it is absorbed, store the B12, and use it normall once it is absorbed and stored, there are unusual cases.
For most people the daily oral dose is best in the long run, and especially when they are able to obtain methylcobalamin. If not, cyanocobalamin or hydroxocobalamin will work for most who need B12. rose |
My feeling, and my observations since I've had a central nervous system disease, is that people who are basically healthy and those who are not have entirely different b12 needs.
While B12 may not be able to cure nerve diseases and conditions, it does have benefits... but for them to be felt in very bad cases it has to be a lot more B12 than that needed by a relatively healthy individual. Most people are reluctant to try the higher amounts, though. I feel that if people tried, kept notes, and then decided for themselves if they had benefitted that it would be a lot better than just taking anyone's word for what they should do. :) |
Of course everyone will decide for himself or herself.
There are, however, some very important principles they should know in order to make the best decision for themselves. One size does not fit all. The severity of damage does not dictate the amount necessary. It is important for everyone with damage to fill their stores to overflowing and keep them full. In addition to that, if a person's liver has been affected or some other damage has affected the ability to transport or store B12, more must be taken more frequently. The degree of malabsorption and ability to transport dictate how much B12 should be taken at a time. Orally that amount should be 1000 mcg at the very least, in order to make sure of getting any in case of severe malabsorption. Methylcobalamin can also be taken in huge amounts. Dozens of times that 1000 mcg dose has been shown to act in a different way in some, allowing objective improvement even if there was no B12 deficiency. That has also be shown safe. As I have encouraged in the past, I believe it is very important for someone to keep notes. At least a few words written on a calendar date can be very helpful--not for days or weeks, but for as long as symptoms continue. Repairs can take place over many months or even years, and it is human nature to adapt and fail to notice progress that comes slowly, or sporadically along with strange symptoms of repairs. rose |
Yes, I very much agree, Rose.
You reminded me that I used to be very worried about the amount of "cyano" I was getting because I was (and am) having cyanacobalamin injections. I feel certain that now that I'm taking Milk Thistle regularly as a liver cleanse, that it's helping... I can't be sure, but my feeling is that the brown spot I used to have in my field of vision has grown many times smaller (nearly invisible) as a result of ... see, I'm not sure... but maybe the Milk Thistle removing toxins... :) |
The cyanide in cyanocobalamin is very little, but I would not want to take it in huge quantities like methylcobalamin is sometimes taken.
And, yes, it sounds like milk thistle would be very important for you. rose |
The prescription I had that was so much help to me, such unexpected help, was for a shot a day.
That would be equal to about 6 of the 5mg Methylcobalamin lozenges a day... and sometimes I had and have two shots a day, which would be 12 of the 5mg lozenges a day... I forget, are there 60 in a bottle? If so, then a bottle would only last 5 days, which would be vastly more costly than Cyanacobalamin shots. (even including the cost of the needles.) basically, I'm glad I learned about Milk Thistle. :) . |
Karen,
I'm very glad you were helped. For most people just taking 1 methylcobalamin tablet each day would be as good or better (and in the brand I am most familiar with, the bottle of methylcobalamin would last two months). Yes, cyanocobalamin is less expensive than methylcobalamin, but they are not the same. rose |
Rose-
I was included in the b-12 study at the same time I began b-12 therapy. Dr. Evatt is my treating physician for the b-12 deficiency while monitoring my movement disorder treatment for Essential Tremor. Though most of her study is dealing with Parkinson's and b-12 deficiency, she's included other movement disorders in the study... |
Hi Rose,
No they are not the same. :) I've never been able to take enought Methylcobalamin for it to work equally well for me. I think if I just had less stress, or were better able to handle stress, that they would probably be fine. I remember Fred talking about how much Methyl he took. I can't remember how he spelled it. He was so kind and sent me some. I was soooo happy not to have to do shots, just major delighted. But after a month or so it was clear that I wasn't having enough B12. When my eyesight becomes blurry, I start having peripheral neuropathy again, my hands go numb, I feel depressed... then I know I'm not having enough B12. So I went back to shots. I suspect that at that time, that was several years ago, I didn't realize how many lozenges I'd have to have to equal a B12 shot. Recently I tried having a lot more lozenges, but then I had teeth issues... so the shots are by far the best for me. I feel certain that if I had not attempted suicide and been given a test for B12 while I was in hospital, which showed my "profound deficiency", that I would be very sick today with little hope of recovery. I know I've been very sick... but tetanus is different than if I had the kind of disease that is commonly thought to be one you cannot recover from. I remain very impressed and hopeful because of accounts like Matty's. Which reminds me, I need to do a post to RN. :) |
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I know you weren't writing to me, but your posts struck me because I've recently had so much trouble with my left arm. I had meant to write to you last night, but I got confused. (Sadly I get confused way too often.) Because I didn't have electricity for a while I got out of the habit of writing notes... so I can't be sure when the particular pain in my left arm began. It was also so numb that it was dead weight. Oh... I remember now, it was a minimal court thing... but so irritating. (I hired a man to build my deck... and after 18 hours for which I was paying him $25 an hour, he had put down 7 boards... and then he took me to court. The court decided that I hadn't given him enough time. :eek: ) It was extremely scary to have my left arm hurt so much and then be so numb that I had to use my right hand to lift it. Everything I found on the internet was pretty worrying. Plus, my chin kept cramping... So I thought that since my grandfather died of a heart attack, that I might be having the women's equivalent. I took extra B12 shots. For me that's two a day. And I stayed in bed. I could barely move, so staying in bed was not a choice so much as a condition. I see that you have a shot every two weeks, and then two 5mg a day. I get so confused by maths... it's very irritating. Still, let me attempt to think about this... if 1,000 mcg is about equal to a shot a month, then 5mg is equal to about 5 shots a month (if taken every day), so 10 mg would be like a shot every three days. So, you're having about a third to a sixth as much as I am having... and you find that your symptoms are increasing. (Plus, you are working.) (But then I have all the stress from the legal things that are going on - I had my condo foreclosed and sold without notice to me of the judgment... major stressful as I'd paid on it for 17 years and it was my savings for my old age.) To me, if you feel as if you need more B12, I am pretty certain you are right. When I was first diagnosed, and I went above 180 for my B12 level, I had to beg to get a B12 shot because the doctors were all in agreement at the clinic where I went that my B12 was normal and I no longer needed shots, especially since I wasn't a vegitarian. Oops, getting upset. So I know what it's like to feel the difference that it makes, and then be denied injections. My feeling is that I would be much healthier today if I had been given adequate treatment... and I don't mean enough B12 to bring my level up above 200. As it was the treatment I received brought back some feeling to my feet, but not enough so that I could feel the broken bit of darning needle in my toe... which is how I got tetanus. To me, the need for significant amounts of B12 exists in some people. I am one of them. I am just so lucky that one of the doctors I went to, a holistic M.D., gave me a prescription for a shot a day for a year. :) That changed everything for me, once I saw (felt) what it did. :) Thank you for your post. I'd sure like to hear some more about your left arm... mine's much better except when there are legal deadlines... |
Jon,
Strange study. Nothing double blind (or even single blind) about that. Maybe your doc is keeping the study in mind while treating you? :confused: rose |
Karen,
Cyanocobalamin is unusable as it is. It must be converted by the body to a smaller amount of methylcobalamin to be used. There may be some very rare people who benefit from cyanocobalamin shots as much or more than methylcobalamin orally. Most people can convert cyanocobalamin to a smaller amount of methylcobalamin, so it's great that you are getting what you need and are happy with the treatment. However, many people make the mistake of believing that because their body does not show the same response days, weeks, months later that it did with initial treatment that the current treatment isn't working. This is not a reasonable assumption with B12 for at least two reasons: 1) B12 is stored, all but a very few will continue to work on repairs using stored B12 for quite a long while, assuming they have gotten enough initially to build stores up quite a bit. 2) When the body works on repairs, the next weeks, months, etc., are not the same as the initial ones. As I have told many people here, there is often a honeymoon period during which things seem to improve very rapidly (this can happen for at least two reasons). After that, if damage was slight, things may be rosy. But, if damage was severe, after the honeymoon the body gets to work on the hard stuff. And that is often when symptoms become worse as the condition of the body is being improved. I am very glad you are getting what you need. But your individual make-up/circumstances/etc., are not applicable to others. rose Quote:
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It's much more complicated than that. A shot per month is not equal to 1000 mcg methylcobalamin per day orally.
Even if the least efficient type of B12 (cyanocobalamin) is taken, people taking a daily oral dose generally have better lab results over the long run than people getting a shot a month. And methylcobalamin is even better. rose |
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But I'm sure I've read posts of yours where you assure that the cyanocobalamin is fine and replaces as well as anything. Those posts of yours are ones I don't understand. (Not to bother explaining, since I've told you why I use the shots, merely cost, given how much replacement I need.) The most important thing for people to recognize and implement in their health lives is learning about themselves so that they know what works for them. Taking notes as they take B12 so that they can see what it does for them is essential to understanding how much THEY need. You may very well need a lot less than me. I don't know if your mother had pernicious anemia. I'm glad you were able to get treatment. I've never understood how you got worse, though, after treatment began. That's sure not something I experienced. And when my symptoms got worse and I told the doctors (that was when I was living in the hydrogen sulfide that I didn't know about) they said -- both my neurologist and my general practioner -- that once B12 is being treated the symptoms can't get worse. What I know for a fact is that the toxin hydrogen sulfide caused symptoms that were identical to those caused by low B12... and after a LOT of supplementation, those symptoms are reducing. I also know that stress can reduce B12. I know that from the large number of regular tests that I had over a long period of time, and the notes I kept. It's a lovely day here and my morning glories are so smile making. :) I better go do some things, and use the morning glories to stave off the stress. :) |
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I thought in the research that I read it said the 1000mcg was about the same as a shot a month... curious.... |
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One of the things that concerns me is that most B12 recommendations, based on lab tests, are the results of studies done on healthy people with intact stores of B12. My neurologist told me that it takes a very long time to rebuild the stores... What I found, is that by taking more I reduced symptoms long after they were supposed to have become "permanent" -- so I wish I'd been given more, sooner so that I'd be much more well now. It is the slowness of this process that I have found to be reflected in my fingernails... In 1997 I had thick, raised ridges on my fingernails... at the same time I had extreme bone pain in my legs and many other symptoms of low B12. Now I no longer have the extreme bone pain, but my feet do not react properly to temperature... and I have a hard time moving my toes. I feel that had the original treatment, ten years ago, been better, that is, more B12 for a long initial period, I might be without these symptoms today. However, I still have moderate ridges on my left ring finger... so I hope that those ridges and my remaining symptoms go away. :) :) |
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