Scoliosis & Vitamin B12 Deficiency

[rohrer01]

Very interesting. It's definitely something to think about. I'm on folic acid due to recurrent pregnancy loss. My OB/GYN thought it might help due to some undiagnosed problem.

[AndreaM]

Hi rohrer01,

The reason for the warning about taking folic acid in the presence of an undiagnosed B12 deficiency is that it corrects the haematological signs of B12 deficiency. Having either a folate or B12 deficiency raises your MCV level and this is what doctors look for to detect megaloblastic anaemia. It makes the red blood cells large and misshapen and they can't carry oxygen properly. However, if you take folic acid, this will make the cells smaller again and disguise any B12 deficiency which might be there. In addition, if you also have an iron deficiency, this makes the cells smaller too and can give a false normal MCV (mean cell volume) level. So you can be deficient in folate, B12 and iron and yet your red blood cells will look normal. This is one of the reasons why so many people are missed as being B12 deficient.

You say you feel quite sick when you take B12. This is fairly normal and it is suggestive of detoxification symptoms as the B12 starts to clear toxic homocysteine from your system. Some people feel even more fatigued for a few days, or come out in boils or acne. Others feel like they have a mild 'flu with sore muscles and general aches and pains. You can also get a metallic taste in your mouth or nausea, stomach cramps, irritability and quite a few other temporary symptoms.

I obviously can't say whether or not you are B12 deficient but I would advise that you get properly checked for it. Since you have been on folic acid and this will disguise a B12 deficiency if it is there, the best tests for you would be Methylmalonic Acid (MMA or uMMA) and Homocysteine. Can I ask why you have been given folic acid? Were you actually deficient?

Andrea

[rohrer01]

Hello,
I'm on 4mg of folic acid per day for a different condition. One of the warnings on the mfg's label was that while you are taking this dose of folate, it can disguise or give false negatives to tests for PA. So for those of you getting tested, make sure you quit your folate ahead of time. I have many of the symptoms you listed there, but I get quite sick when I take B12. It makes me so nervous I can't stand myself. Compound nervousness with fatigue and it's a pretty greusome combination. I never noticed a reduction in pain either. I'm guessing that's not my problem.

[AndreaM]

Sublingual supplements work by being absorbed through the mucosal lining in the mouth but only a maximum of around 5% is absorbed, whereas with injections it would be about 30%. The B12 patches are obviously absorbed through the skin but there is going to be considerably less absorbed this way than injected directly into tissue and carried in the bloodstream. I agree that a slower delivery of B12 would be better but, since injecting it is definitely the most effective route, it would not be practical or advisable to inject several times daily. Patches, sprays and sublingual tablets can give some benefit but not everyone finds them effective. They would not be sufficient for someone who has an actual ongoing deficiency, particularly if their defect is genetic rather than from malabsorption. I am an example of this and need three injections a week rather than the normal 3-monthly one given to most others (although many of them cannot manage on that regime either).

It is the general understanding in the medical profession that PA is an old person's disease but that is not now the case. Many people are developing it in their 20s and 30s and the PA Society has cases of babies and younger children having it. It is also implicated in some cases of child autism with those involved responding very favourably to B12 injections and regaining lost skills. Unfortunately, because doctors are not expecting it in younger people, they are not looking for it and many people are experiencing severe nerve damage and deterioration before themselves finally stumbling upon what is wrong with them. Deficiency caused by genetic defect often doesn't result in a low B12 level yet needs the greatest amount of B12 to treat it. Some are misdiagnosed as having MS as they develop the same demyelination of the nerves as seen in MS. However, it is treatable when caused by B12 deficiency! Homocystinuria is a genetic defect so Scoliosis being caused by a genetic fault fits with that finding.

There is so much lack of understanding of this condition and it is worldwide. Celebrities use of B12 as an energy boost has done nothing to help this situation as doctors are now seeing it as some sort of quick fix to flagging energy. This has led to some of them refusing injections to those with a genuine deficiency.

I have put my findings on Homocystinuria to a Neurologist who has taken me seriously and is trying to find a way for me to be tested for it. However, since hardly anyone has any knowledge of it, this is proving impossible.

I would love to know how many people have both Scoliosis and B12 deficiency but, since so few are ever properly diagnosed with it, most of them don't actually know what is wrong with them and assume that it is just their general health which is breaking down or must be a result of deteriorating Scoliosis putting pressure on different aspects of their health.

[Karen Ocker]

Some balanced scientific info on vitamins.

This is an easily readable article. Vit B-12 deficiencies are seen most often in persons over 70 because they do not absorb B-12 well from food; a simple multivitamin is helpful.
I have not seen anything associating scoliosis with B-12 deficiency. Genetic factors seem the most likely based on recent scientific studies.

http://www8.nationalacademies.org/on...?RecordID=6015

[pmc]

Hello Andrea,

Thanks for your reply! Why do you feel the patch couldn't be as effective? I was reading about b-12 and learned that the body can only absorb so much at a time, it seemed that the patch releasing slowly over 24 hours might be a positive over one big shot. I believe some contain Methylcobalamin as well.

I'm in the US, by the way. The patches generally look to run about US$6.00 each, and I think that'd be a week's supply. I do know there was a spray available here, but it was discontinued- it didn't say why, however.

I'm not aware of any notable vision (I assume typical reading glasses or bifocals don't count) or mental issues in the family, but some of the shared symptoms (varying in degrees and 3 of people) are insomnia, anxiety, memory issues, ridged nails and tinnitus. My mother, 75, thinks she has 9-10 of the symptoms the list, though she was only diagnosed with very mild scolio within the year.

Thanks again!!

[AndreaM]

Hi pmc,

I have heard about the patches but as I don't know of anyone who has tried them I really couldn't say how effective they would be, other than they would definitely not be anywhere near as effective as an injection. They would also be very expensive to rely on for ongoing use.

I don't know what country you live in but there is a new liposomal B12 spray which is probably the best non-injectable product. You can buy this in the UK or Europe and this link will give you more information:

http://www.yourhealthbasket.co.uk/in...ct_detail&p=17

It has the best form of B12 in it - Methylcobalamin (the active form and best for nerve repair). I was involved in a small trial and most of those who tried this spray found it better than sublingual lozenges but still not as effective as an injection.

I have not come across someone who has other family members also with Scoliosis and am interested in what other symptoms are in your family, particularly in relation to eye problems (squint or dislocated lens), mental retardation or Marfan's Syndrome features. If others in your family have any of these problems then it would be very suggestive of the presence of Homocystinuria. I have a brother with mental retardation who also has a squint and very poor eyesight. He is now in his 50s and is taking slight fits yet we can't get his doctor to listen to what might be wrong with him.

By the way, if you were able to obtain your B12 from your doctor then you could ask to be shown how to self-inject so that you can have that freedom. I do this and it makes things so much easier, especially if you are away from home.

[pmc]

Thanks, Andrea, for the very eye opening information! I can certainly identify with some of the symptoms to various degrees, and other members in my family (also with scolio) do, too. I hope to get the tests done if my GP is willing.

Someone just told me about a b-12 patch today- any chance this could work in lieu of shots? It sounds more convenient and pleasant than injections, and it could make one a bit more independent. edit: here's a little info about the patch: http://www.b12patch.com/vitaminb12/v...njections.html

[AndreaM]

It is my pleasure Darrin.

Andrea

[AndreaM]

I think that's a wise decision. Let me know what comes from it.

A serum B12 level below 400 along with a low folate and/or iron level justifies a trial course of injections.

[AndreaM]

I can only advise that you get properly tested for this as the amounts needed to treat it are hugely greater than what you will find in any supplement.

[AndreaM]

Hi Darrin,

Can you tell me how much folic acid and B12 is in each tablet? Ideally, you are looking for at least 1mg of folic acid and 3,000mcg of B12 but to correct an actual deficiency you're looking for daily amounts of at least 2.5mg of folic acid and up to 10,000mcg of B12 in the form of Methylcobalamin and it has to be sublingual.

It is also much better to have your levels checked before supplementing so you get an accurate result.

[AndreaM]

Hi Darrin,

I would suggest you try to get the B12 injections. Oral tablets are not worth taking and sublingual ones may help a little but are still nowhere near as effective as an injection. The thing which matters is not how much they raise your serum B12 level, but how much they deal with your symptoms.

Please go to your doctor and ask for the tests I mentioned above. If your symptoms are indeed due to a B12 deficiency, then you are already developing nerve damage - that is what causes the tingling in arms and legs - Peripheral Neuropathy. It is also what affects your balance. You have to address this now to have any hope of reversing damage already done.

Please don't hesitate to come back and ask me anything which you need to know,

Andrea

[AndreaM]

I didn't personally experience tinnitus, although I do remember sometimes getting a very fleeting ringing but thought it was down to congestion, however, many sufferers are plagued by the misery of tinnitus.

I really would urge you to get tested as soon as possible. B12 deficiency is a serious matter and, in addition to multiple worsening damage and pain, it eventually leads to dementia and death. I was already in the early dementia stage. This quickly resolved once on treatment, except for my short-term memory which still affects me now.

I'll never know how much of my physical pain results from the scoliosis as it has deteriorated with age but the only symptom which I'm sure has nothing to do with scoliosis is the nerve pain as it is almost certainly the result of demyelination of the spinal cord, similar to what happens in MS, and indeed this is what some people are misdiagnosed as having wrong with them.

[mamamax]

Thanks for posting this information AndraeM. Had enough of the symptoms that I'm going to ask for some testing next visit to my specialist. Tinnitius is the most aggravating one :-) Amazing that treatment turned so much around for you - wishing you continued healing.