It's been a little while since my last post, I've been lucky and have been feeling fairly good sine starting my injections. In the last 2 weeks I've been experiencing a strange new symptom, and was wondering if this sounded familiar to anyone.
When I was first diagnosed earlier this year I had very severe neurological symptoms as well as just about every other symptom under the sun. The sub acute spinal cord degeneration left me numb and tingling from the neck down. I was told that it could take up to 2 years for the full extent of my healing to be felt and although I feel much better, I continue to have difficulty with some neuro issues. Although my last b12 in September was over 2000, all of a sudden my right arm from the shoulder down has begun to tingle on an off. The sensation comes on like gang busters, lasts a few minutes and then disappears as quickly as it started. I'm grateful that it only lasts a few minutes, but it happens too many times during the day for me to feel comfortable.
This is nothing like any symptom I've had in the past and is brand new. Should new symptoms begin out of nowhere even when b12 is high? Is it possible that this is a new symptom as a result caused by other vitamins or minerals being skewed due to high levels of b12? And, if so any ideas as to what it could be?
PA has turned me into a hypocondriac! I've never been worried about my health to this extent, and now every time I feel ill, have an odd itch, or some other tiny nothing happens, I'm ready to run to the doctor. I usually keep myself in check because I don't want the doctors to see me as an anxious person who makes herself sick. I'm worried that if or when something "real" happens they'll write it off as "nuts" and not take me seriously. I can usually calm back down when I realize that it truly is nothing; however, this time it's not going away and although I don't want to, I getting very worried.
Any input and or ideas, will be very much appreciated!!! Thanks in advance to the help!
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I think I did mention permanent neuro damage when you posted last time?
I'm sure it's sensible to check if other levels are okay and nothing else is going on - but unless people get a 'handle' on what neuro damage is questions like this are going to crop up indefinitely.
There are billions of nerves and cells in the human body. Intricate mechanisms which make us function as machines. When they are damaged they can produce myriad symptoms.
Nobody truly understands nerve damage - which is why they can't fully and permanently repair spinal cord injuries. I believe it is said that nature put in an inhibitor to stop nerve damage being repaired in the spinal cord because such is the extent of the problems related to such injuries, that she didn't want a species to be able to reproduce which would be less than fully functioning.
If you speak to someone who has had a physical accident and got nerve damage as a result - whether that is from a deep cut or crush injuries or whatever - and they tell you that they have permanent nerve damage, there is no reason to disbelieve them.
You also get a similar situation in that you may have a physical injury in one area of the body but it actually results in pain in another.
Why should damage caused by vitamin b12 deficiency be any different to that of a 'physical' injury which you can see externally?
I think I said last time you were on that the road to 'health' if indeed there is a path back for some people, to where you once were, is not linear. You will go up, you will drop back. Other things appear, then they go again. It takes some coming to terms with.
Think of it as having a physical injury - a crushed hand for instance. You wouldn't expect that to get better the second you got treatment. You would hope for, but not be surprised, if the path to recovery involved no set backs. You would hope for, but not be surprised, if you didn't get full use of it again. You would expect as time goes on for it to get better in many ways, but to suffer other issues (for example, aches as you got older, or a sensitivity to cold)
On top of that, of course, you have to cope with a few thousand idiots running around you telling you it's a blood condition and you should be absolutely fine the minute after your blood levels are normalised - or maybe that's just in my world!
Incidentally, if it is folate deficiency causing symptoms, folate deficiency symptoms are reversible, b12 not so. If you increase folate but still have the symptoms then ....
I'm pretty new to all things B12 but was taking it last year. I developed carpal tunnel, which gives pins and needles type effect in the hands and arms just by moving my hands above the elbow, even a tiny bit.
Anyway I've since read you are supposed to supplement folate and folic acid with b12 as b12 depletes one of them from the body so you end up with the other deficiency, I think it's folate, sorry brain is all foggy due to thyroid.
Whilst I haven't had that particular sensation, I did find that well into my treatment I felt all sorts of new aches, pains and sensations...and I was also ultra concerned over everything (am i having a heart attach, is that pain caused by a tumour!). It seems to be common...I've heard many of people mention they end up getting a test for this or that or ending up in the ER only for nothing to show!! I believe it's because when your levels get high the real healing starts on all the nerves and that causes all of the various sensations. Maybe the healing affects our thought process or maybe it causes us to be hyper aware of how we feel...I wonder if the healing happening in our brain manifests as the 'fear' many of us seem to get!
Hi , It is worrying for anyone to get these weird symptoms. It will take time for things to settle down and hopefully some nerve damage will repair. It has been 2 years since my treatment started (but a decade of suffering prior to that) and I am only just beginning to feel human again. However I still do get anxious and irritable and tired and still get pins and needles - and that may be permanent neuro damage - who knows. Hang in there . I do find adding in methyl sprays and losenges helps me and I do take a low dose folic acid supplement and very low dose iron supplement (Boots 14mg iron with vit C). All these things are affected by B12 deficiency. Everyone is different and it takes time to realise what your body needs.
How about magnesium? The pins and needles feeling can also be a sign of magnesium deficiency :/ (no matter what we try, the excitement never seems to end, does it???) It helped for me. Maybe give it a try. Best of luck!
Some of the persons are not converting synthetic forms of B6 (pyridoxine HCl) very efficiently (including me). My B6 level was four times (4x) higher than the upper limit. Excessive B6 can also cause peripheral neuropathy.
My condition has slowly improved when I ditched all the B6 supplements. I am having daily B12 injections. I also consume 5 mg of methylfolate every day.
Hmm. I also had a doctor recommend that. Hmm. It's a shame people don't really understand the significance of vitamins. My understand of b6 is that it is absorbed differently to b12. In that the normal route of absorption of b6 is via passive diffusion. B12 can be absorbed by passive diffusion but only in very small quantities (around 1%) and this is not the 'normal' route.
You can see the imbalance already.
So, I get your point about the b6. I also get your point about the synthetic versions of vitamins (whether b6 or otherwise) - it has long since been a bug-bear of mine.
An interesting situation if you don't mind me saying.
Thanks to all for the replies. So based on the advice about taking other b's......if we don't absorb b12 orally, can we a word the others? And, without running to the doctor, how do I know if I need other b's? Can I be hurt if I have too much, I know excesss b12 is excreted in the urine same for the others?
You can take to much of B6, and to much can also cause peripheral neuropathy, as Mark already mentioned in his post above. Same counts for other vitamins such as vit E etc. That is why its best to just take an over the counter multi vitamin, all then will be in balance and none will contain to much of one or the other. Singling out B vitamins only is not what I do, you need allsorts like calcium, vit C and iron not only B vits is how I see it, but all in a balanced supply.
To much vit C can inhibits B12 absorption, but aid iron absorption. Calcium is good for B vit uptake but inhibits iron absorption, so all should be in a certain quantity say,
It's really difficult to answer that question. As Marre says she takes a multivit and it suits her. I don't take a multivit - I don't like the folate (folic acid) v b12 imbalance in multivits. I also don't absorb calcium very well. I do however like a nice iron tonic!
As in Mark's case he clearly has a problem metabolising synthetic b6 - the issue of problems with the metabolic processes of synthetic vitamins is only really just coming to light. I'm absolutely certain (without the benefit of tests) that I have a problem with folic acid.
Vitamins are micro elements - they are only needed in teeny-weeny amounts - if our absorption is working correctly. If it is not, and we don't know why it is not (who ever looks into anything outside of PA!) then can we make a safe assumption that we are not absorbing other vitamins or that we need to 'balance' the mega doses of b12 we are taking?
I don't know.
It would depend on why we malabsorb, how other elements are absorbed.
The b6 is a case in point - I know very little about it (life has rather been taken up by B12!) but it is absorbed differently. Do we need to 'balance' the b12 intake with a requisite b6 intake? As you quite rightly ask, can you have too much b6 even though it is a water soluble vitamin? The answer it would seem, is, yes.
Compare the issue with one of food supplementation and it's a wonder anyone needs to supplement with anything!
If I was to offer suggestions - and they are only suggestions - I would try and stay as close to the natural form of any vitamin you want to try and start small. I would try them individually simply because I know from experience that some actually make me worse - yet others swear by them.
I won't touch Vit d for instance.
The issue is of course further compounded by the fact that you have only just really started to get healing toward the b12 damage. You don't know what's what, yet.
And it's a pig isn't it? You feel so ill, you get the b12 and it makes such a difference! And then you start with these stupid, rotten fluctuations that make you think the b12 isn't working and there is something else wrong. I'm telling you, the first year is the worst. The highs are great, the lows are sitting somewhere underneath Hell!
Oh I suppose I must be honest, I have a muli vitamin in the cuboard, but taking it, is most probably once a week if not less than that, I also may take an iron tab, I was prescribed vit D3 with calcium, for osteoporosis, but do not take that, tried vit D3 on its own and no thank you, to much bruising and burping etc, I do take folic acid tab, 5mg, once every 2 weeks on the day I jab B12, this keeps my serum folate in the normal range. I did become def in folate, so this is my way of keeping it level, and feeling well. But then I also sometimes (twice a week on average, colestipol) take stuff that will inhibit uptake of certain vitamins so that is why I try to be good in taking this multi, having had a vitamin profile done and that implied I was also def in other B vits and vit E. But I am not a pill swallower and believe all is poison, try to adjust my diet to add the def vitamins by eating nuts and cooking with olive oil etc. time will tell if that is good enough. Its a haematologist who advised me to take a good OTC multi vitamin, and that advise does seem sensible to me, I just do not apply it much to my self.
Oh, thanks for that Marre - I couldn't stop laughing!!
I'm not a 'pill-popper' either.
Interesting that you don't much like vit d either.
I do exactly the same as you - try to include more of the vitamins I think I need, via my diet.
Not saying that everything is right - I have terrible problems maintaining my weight and I wish I had more professional help with it all, but I don't. I was told by a professional though that if you develop tremor it can be that which uses up the calories and so you get thinner.
I feel I just have to say the right thing, even if I do not follow it..
Yes its trying and see what helps I think. Vit D3 and the adcal meant if I opened a screw top bottle my fingers would be blue/ bruised. What ever I knocked would produce a big bruise, I did not like that, besides terribly stuffed feeling after eating, which does not help maintaining weight. Am convinced the doses are far to large, again one size does not fit all, there is a difference with how an 8 stone body reacts to a certain medicine and a 16 stone body.
Can imagine the tremors using up calories, your using muscles all the time, are you any closer to knowing what is causing that? I suppose the options of taking medication to stop it are not nice either..
I think it is very interesting what you noted about the d3 and bruising. I never joined the dots on that...
For a lot of the time I worked outside anyway and was covered in bruises because the work I did was 'manual.' So, if I took off my trousers and I'd got a big bruise I'd just put it down to getting a knock but not remembering.
But you remember a while ago I put up the photo of the excessive bruising of my arm after I had a blood test taken? That happened after I had been on D3. The reason I had the blood test was that I was complaining I felt worse on the D3. I also had other bruising after blood tests but that was the worst one.
I too think the doses are too large and I have discussed this problem with other people, outside of talking about b12, when it comes to medication in general. I actually had a GP tell me that I could take up to 8 paracetamol a day (for my back and leg pain) because "they are like sweeties." But as you say, one size does not fit all. Eight tablets a day for a 16 stone man may well have different effects on an 8 stone woman.
The tremor thing is going to get looked at. The problem is sorting through the mess that previous doctors have made. I actually sat in front of, for want of a better word 'welfare' worker the other day, who on seeing all my results hit the phone and started to try and sort things.
I was actually overwhelmed by her concern!
... and if anyone does have any ideas on the following I'd be happy to look into them - not trying to steal the OPs thread!
The stuff I understand relative to b12 deficiency is the muscle atrophy (left thigh). So my thigh muscles don't work when I flex them. I can understand the nerve damage = tremor and that tremor getting worse simply because I have had no physical rest from well before the diagnosis.
What I cannot for the life of me understand is my right leg. Although I've had a few problems with it, comparative to my left it has been absolutely fine. But about 4 months ago I started to get a good bit of pain with it (thigh) and also noticed that the muscles in the thigh were looking as if they were more or less, permanently flexed. In short I look like Mr Muscle with my left leg and Arnold Schwarzenegger with my right. My legs look like they belong to two different people.
This seemed to coincide with the increased tremor (particularly in my legs) and it really started to restrict mobility in that I can't walk more than about 100yds before the muscles in the right leg go beserk and start screaming with objection.
So, everything seems to tally with b12 deficiency nerve damage - except the right leg - and I freely admit that I don't get it.
Anybody saying paracetamol are like sweeties should not be in practice at all. They are dangerously toxic to the liver with just a small overdose, as a friends child found out a few years ago on awakening from transplant surgery after taking a couple more than advised for a hard to shift headache. One of the luckier people, because a liver was available.
Appreciate this discussion. Stuck in the doldrums still, after convincing my neuro to advise three months of weekly shots, as planning to use the B12 app to monitor progress during that time. My GP has put a block on this happening. As I'm next to useless with very restricted mobility now, this is a blow. Funnily, expensive scans seem to be easily available, im due for two. I have little belief that either are relevant or necessary, only know I could get vast quantities of B12 for the price! Probably enough for my lifetime.
I'm no pill guzzler either, and no extravagant user of medical services.
I'd love some information on what kind of a window we have before damage becomes irreversible, does anyone have any info on this?
But then again he also said, when I asked if he would like to use the other arm when taking a blood test because a vein had blown in the other, "Yes, I will. Because you know, it's the same blood in both arms."
... and there's me thinking blood was unique to each different body part! See, they really do think we are simpletons!
Try looking up Victor Herbert's Stages of B12 deficiency. He did a few over the years.
Whether symptoms will ultimately be irreversible depends on what stage you are at and how long you are left. Only you can assess, via your symptoms, what stage you believe you are at and get any idea of the possible long-term outcome.
Indeed. And wasn't there recommendations a few years ago that blood pressure should not only be checked sitting down and standing up but also in both arms?
If I were monitoring my own BP (and I feel no need to, so do not!), I think I would probably alternate left and right. Simply too much effort to do it on both every time.
(Mind, I would check both to begin with so that I was fairly confident they were not miles apart.)
Have you dropped the coffee cup yet? I got to feeling like a was a complete klutz. I get random cramps also. And randomly bump into things when trying to do the simplest tasks.
The only advice I can offer is that your new symptoms are unique to you. Everybody has additional symptoms - some from the medications, some from metabolic byproducts. Keep a timed log book of medications, food and exercise as well as your symptoms. I found that I get some symptoms 24 hours after eating something (this ended up being a new gluten intolerance), also had the same recurring symptoms following the jab with a fairly regular pattern. Use the log book to track reoccurring symptoms to some common - food, medicine, etc. in the past. Symptoms do not appear immediately after, but quite often there is a metabolic process involved first that takes time. It is also hard to sometimes remember what one did yesterday. Once you know which symptoms are in a regular pattern from your medication, you can relax on worrying about those and focus on finding the causes of the "new" ones. This also give you some control as stress has its own set of symptoms.
When I went to my GP with all the new symptoms, he "diagnosed" me with anxiety disorder and prescribed an anti-anxiety/anti-depressant drug. This caused additional symptoms, didn't help and gave me tinnitus as well. I was only on one brand for a week and a second drug for another for about 2 weeks and he took me off and after seeing my log, gave me more B12. Please, don't let your Dr do this to you.
Gentle Exercise is also critical to nerve recovery. The body only seems to repair the nerves that are in use. Movement of the muscles makes use of the nerves that drive them and this triggers healing. I found that it is hard, and painful, to get started with exercise, but once started, everything gets easier. Movement of the big muscle groups also promotes additional metabolism and removal of byproducts from the healing/nerve reconstruction process.
Don't get impatient and give up. Nerve repair is very slow - your log book will also show you evidence of your snail's paced progress. What additional supplements are you taking?
Taking doses of B6 around 100mg a day or more over a long period (few months) is known to result in neurological symptoms - it was big headlines about 10-15 years ago - in general the symptoms go away when the high dosing stops but there are some documented cases of permanent damage.
B6 has long been used to treat hormonal headaches - I supplement much lower doses of B6 at the moment because I was getting some quite severe problems with hormonal migraines - hasn't banished them completely but they are now back to manageable proportions where as I was losing couple of days a time to them 2x per month. Managed to get away with minor problems 1x this month.
I remember seeing somewhere that B6 and B9 (folate) interact quite closely and the body does seem to be able to convert one to the other.
Also seen something somewhere recently implying that high levels of B9 can also cause neurological symptoms so definitely a case of getting things in balance. I eat loads of green veg so ought to get enough folate from that but still supplement because I also know I get through huge amounts of B12 in order to keep myself at point where I can function properly.
The body uses B12, B6 and B9 to recycle homocysteine into useful products that maintain a healthy cardio-vascular system - interesting though that studies have shown very little impact from supplementing B6 if that is low. B12 and B9 are needed to deal with MMA (not sure if B6 is also used).
Study at Oxford University from about 2006-2012 showed that supplementing B12 and B9 had a dramatic impact on loss of brain cells in people experiencing mild cognitive impairment.
I'm interested in what you have to say here, Gambit - but the one thing that irks me (not that you do!) is the study at Oxford.
That study only used 500mcg of oral b12 and much larger doses of b9 - we know now that it takes a minimum of 1,000mcg b12 to make any difference to reversing b12 symptoms. Yet the study came back with the result which suggested b12 didn't make that much difference.
And there are quite a few studies around which reach the same conclusion but they too only used small amounts of b12. It seems, for the most part, they looked at serum b12 levels to measure whether the patients had 'enough' b12. Say no more.
They use larger doses of folate because this stems back from the time when they believed that folate deficiency was the root of all evil.
Every study I have seen either uses the serum b12 as their baseline. Or uses too little b12 to reverse symptoms. Or waits while patients have got advanced neuro injury before trialing them on b12.
Then they pronounce it has little effect!
Have you ever had your head x-rayed to see if you have sinus problems? Thinking of the headaches...
Have sinus problems as well - but that tends to relate to changes in air pressure and there are times when I'm sure I've rattled with all the different painkillers and medication. I find that sleeping propped up a little has helped significantly with the sinus effects but the migraines are definitely hormonal - family thing as gran and mum had them - can't go back any further than that - and should start to fizzle out anyway soon as I'm peri-menopausal ... and both gran's and mum's lessened significantly when they got to late 50s.
The study at Oxford wasn't anything to do with B12 deficiency itself - if it is the same one - The selected the levels of B12 based on assumption that normal absorption was breaking down but passive absorption was still taking place - and used F9 as well because they were aware that both are needed for some key processes.
Personally I suspect that there is a lot more going on in B12 deficiency than just the amount of B12 that gets into your system and that transportation and cellular metabolism have probably started to breakdown explaining why some people need much, much higher doses.
I don't know whether you have had your head x-rayed relative to the sinus thing - but I would. I went 8 years with headaches that were put down to ... everything but sinuses.
When they x-rayed my head they were a right mess.
It might still be that you have the additional migraine problem but if you can shift any sinus problems out of the way then at least you get a clear view of what's happening.
Don't know whether it is the same study - but I know if selection processes are based on serum b12 levels then the whole study is flawed from the start.
Then you always get the imbalance - the larger dosage of b9. This is based on what evidence? Why that much B9? It's the same in food-stuffs. Are we back to the 5mg folate situation? If so, is this information correct? Oh, heck, I know the answer to that one. But I'm not telling you!
I think there is more to the b12 situation than just b12. It's just that b12 causes the most permanent damage and needs to be rectified asap.
And if the powers that be have been missing the true nature of the problems with b12 for decades - we can't make the assumption they are getting other stuff right.
I don't think that we can be talking about the same study - the only screening for subjects was to test that they did have mild cognitive impairment (MCI) - no screening of B12 levels as far as I remember
So how did they establish the base line relative to people who had got possible absorption issues? (genuine interest)
I don't know whether we are talking at cross purposes - but - if you are trying to establish if b12 would make a difference to patients suffering mild cognitive impairment and if b12 would make a difference to that - then surely it makes sense to give them at least the lowest recommended dosage for reversing any clinical symptoms of b12 deficiency?
It's a bit like trying to test if paracetamol works as a pain killer by giving patients half the dosage which is known to be needed to relieve pain.
... and I didn't mean I wouldn't tell 'YOU!' personally about the folate thing - just that I don't like to say anything until I have got all the odds and ends sewn up nice and neat!
Focus wasn't B12 deficiency it was whether B12 has an effect on memory impairment, after noticing a correlation between brain shrinkage and high levels of homocysteine.
This is a link to the the study page on the website
But do you see what I'm saying, Gambit - we know (as patients) that we suffer from cognitive impairment whether we are 'diagnosed' b12 deficient or not. Because the typical diagnosis a) relies on the serum b12 test and b) very, very rarely looks at either homocysteine levels or MMA levels (although that might change after the BMJ/Hunt study)
Most people aren't picked up with neuro damage (physical) until their levels are into deficient - we can only presume that most people with cognitive problems (when they are in the initial stages or subtle) also suffer the same fate.
In spite of the above we do know that the symptoms of b12 deficiency (whether neuro or cognitive) don't respond to oral treatment less at dosages of less than 1,000 mcgs per day.
It may well be that as a direct resultof the Hunt study more people are picked up as having early onset dementia because homocysteine levels will be measured more often and this will lead to increased treatment with b12. But the minimum treatment they will be given is 1,000mcgs per day or the injectible route.
Put it this way: if they had performed the research by giving the patients 2,000mcgs of oral b12 per day - I would have been very interested to see the results.
I'm editing again - I can only watch bits at a time because my laptop overheats on YT!
Let's look at this from the start:
First you have the 'confusion' about what PA is. The myth that PA is an illness which results in an anaemia which is fatal. But that is only prior to 1926 when the anaemia itself was idiopathic - of unknown cause. And the majority of the patients did not die of anaemia! They died of neurological issues, complications of the same or the anaemia. The anaemia was merely one of the diagnostic criteria used in identifying the illness. Many people didn't have it - which is quite possibly why it was classified as relatively rare - thousands never got picked up because they only had the neurological symptoms.
It was fatal because they didn't know what caused it or how to treat it. Then they learned how to treat it and then they learned why the treatment worked.
They also discovered that 'some' patients with the fatal "anaemia" had a lack of intrinsic factor. But whether they did or they didn't if they didn't get treatment they still died.
At the time it was presumed that the neurological/cognitive problems were as a direct result of the anaemia. They were wrong.
In the 1960s it was discovered that the anaemia was a symptom of the cellular degeneration which was taking place and that was as a result of b12 deficiency.
So, we have a situation where, because of reasons I'm not going into, the tests were designed at a level to identify and treat the anaemia - but only when the anaemia was presumed to come first (and it is actually at the end of the food chain!) and that anaemia is easily treated.
But what we do know now is that b12 deficiency causes neuro damage and cognitive damage and in many,many patients the anaemia will not be apparent in haematological tests.
So, we get b12 deficient patients who have been for brain scans and they have got brain atrophy. This is aside from all the people who have cognitive issues - whether they be subtle or otherwise. Yet we know that those patients only respond to 'oral' doses of b12 of 1,000mcgs per day +.
Do you see my point about giving them less than that and not producing any miraculous responses? I'm not saying there aren't any responses - or positive indicators - just that it isn't enough b12 to effectively measure how much b12 would be needed to improve Alzheimer's.
The confusion is vast.
It's about what PA is.
It's about what b12 deficiency is.
It's about the tests to establish whether someone is deficient and considered treated.
It's about oral v injectible b12
It's about causation.
It's a mess.
I'd like to see people with dementia have serum b12 levels tested and any with levels under 500ng considered deficient (because that's the level when there are changes in spinal cord fluid) and I'd like to see all those patients treated in the early stages and with mega doses of injected b12 over at least a 2 year period and trials of with all the different kinds of b12.
I am wondering if you have tried the Nettie Pot & rinse solution to help clear sinus problems. I have not been bothered with sinus issues since I started using it a few years ago. Good luck with your health issues.
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