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AndreaM
11-04-2009, 03:51 PM
I was diagnosed with Scoliosis in 1976 aged 15. I had a fusion done in 1979 which was reasonably successful. However, the rod loosened several months later and I had to have it removed a year after the fusion. I was left with scar tissue and constant pain and was put on NSAIDs and acid-suppressants to protect my stomach.

Nothing much changed for about the next ten years. I then married and had my children in the following two years. When my younger child was just eighteen months old, I suddenly had stabbing pains in the sole of my right foot. They were constant for about a week before subsiding a bit. However, I then began to get the same type of pain in other parts of that leg. I assumed it was a deterioration of the Scoliosis and so did the consultants I saw. I was given x-rays and MRI scans and, although there was evidence of calcification and prolapsed discs, this did not in itself explain the pain I was experiencing.

Six months later, I experienced a TIA (mini-stroke) and it was discovered that my BP was high and I was put on medication for it. From then on, I never felt well. The pain, which I now knew was nerve pain, was getting worse in intensity and frequency and was very difficult to control. I was using a cocktail of NSAIDs, analgesics and Gabapentin to try to keep it under control. I then began to lose grip in the sole of my foot and the muscles at the back of my leg withered. I then experienced bowel problems, an inability to control the emptying of my bowel, and along with that, slight stress incontinence and frequent bladder infections (UTIs).

I was also diagnosed with allergic rhinitus and was constantly congested, requiring nasal surgery. I also had frequent random allergic reactions and unexplained random infections. I was constantly exhausted - not a need to sleep but a complete lack of energy and a heaviness in all my limbs. I started stumbling and losing the ability to concentrate. I slept (or rather didn't sleep) but had to lie down for most of the day. Muscles in my legs would constantly flutter or jerk and I began getting excruciating foot cramps. By this time, I'd also had an operation to straighten and fuse my big toe as it had turned in under the others due to numbness in my foot and leg.

My stomach was constantly upset. I always felt full and bloated and uncomfortable and brought up copious amounts of gas. Then, I couldn't even stand to prepare a family meal and had to keep taking in gasps of air. By last September (2008) my bladder ceased to function at all and I had to start self-catheterising. I also had to self-evacuate my bowel as it had packed up too. By now, I also had to use a cane and could only walk yards before needing to sit down and rest.

Just as I thought I couldn't go on much longer and felt close to death, I noticed someone mention Pernicious Anaemia on the internet. Curiosity alone made me look up what it was and I was astounded to see all my symptoms listed there. My GP agreed to check me for it but the result came back normal. Despite this, and because I still had all the symptoms, he offered me trial injections. Within hours of the first one, I noticed an improvement. That night, for the first time in months, I had no pain at all. Within the week, my BP had returned to normal and I was able to stop the medication. By the following week, my energy levels were beginning to recover and I had stopped stumbling.

Five days after the last B12 'loading dose' my symptoms began to return. I returned to my doctor who allowed me more injections. Nine months later, I'm still on an injection every three days else my symptoms return and have been taught how to self-inject. I can't believe how much better I am and feel lucky to be alive.

However, I haven't responded to treatment as expected and the normal maintenance dose for PA is one injection every three months, or every two months if you have neurological involvement which I clearly have. Even although it is now clear that many people can't manage on a three-monthly injection, very few need as frequent treatment as me. I began to try and find out why. My problem doesn't seem to be one of malabsorption but of something going wrong at a later stage of the process. While researching this, I came across the condition Homocystinuria. I noticed that two of the symptoms are Scoliosis and toothcrowding (which I also have). Those who inherited only one defective gene could remain free of symptoms until adulthood but were at more risk of folate and B12 deficiencies (I also need to take a permanent high dose of folic acid).

I had assumed that my B12 deficiency was caused by my long term use of acid-suppressants as these are known to cause B12 deficiency by preventing the stomach from absorbing B12 from food due to insufficient acid necessary for this function. Added to that was the fact that NSAIDs also have a detrimental effect on B12 and the antibiotic I had to take permanently for repeated UTIs which are an inevitable result of self-catheterisation.

I now wonder whether my Scoliosis and Folate/B12 deficiencies are the result of mild Homocystinuria. In this conection, I would be very interested to know how many Scoliosis sufferers have gone on to develop folate/B12 deficiency. Also, for those who perhaps haven't got the length of being diagnosed, do you recognise yourself from the following list of folate/B12 deficiency symptoms:

Crushing fatigue
Insomnia
Increased anxiety
Inability to concentrate
Memory problems
Balance problems (particularly in the dark)
Need to look at the ground when walking
Stomach upset
Bowel and bladder problems (incontinence/bladder retention or diarrhoea or slow transit constipation)
Tingling and numbness in arms and legs
Electric -shock type pains in particularly legs
Brittle or ridged nails
Prematurely grey hair
Tinnitus
Failing eyesight
Paranoia or mild depression
Sore tongue (beefy and red)
Suppressed immune system
Restless legs and muscle jerking or spasms
Continuous congestion
Need to keep gasping in air (like involuntary sighing)
Enlarged liver (right-hand-side neck/shoulder pain)
High blood pressure or racing heart/palpitations

I asked a similar question on the Pernicious Anaemia website forum and, of those who voted in a small poll, 33% had Scoliosis and B12 deficiency. This seems to me to be considerably more than would be expected.

I would really appreciate if as many of you as possible could respond and let me know if either you, or someone else you know with Scoliosis, has gone on to develop folate/B12 deficiency.

Please also let me know if you recognise yourself from the above list of symptoms,

Thanks very much

AndreaM

jrnyc
11-04-2009, 04:10 PM
Hi Andrea

i am so sorry to hear how much & how long you have suffered!

i dont think i understood your post...are you saying scoli causes the vitamin deficiencies, the other way around, or is just related...dont understand what you are saying..i have had scoli for so many years, but no vitamin deficiencies..just vitamin D, common to those who live in northeast & dont get sunlight in winter....so i take supplements

i was given B12 to inject myself when i was severely ill with lyme disease..it was to address the crushing fatigue..lyme can feel like mono & MS at the same time... but when the worst of the lyme went away, (with buckets of IV antibiotics!) we stopped the injections..i should note, i had no deficiency, just severe fatigue..& of course arthritis & other lyme stuff...dont know that the injections even helped me....but i was desperate!!

i worry when so many things are associated with scoli in peoples' minds..i am not denying what you wrote, & your own personal illnesses & experiences are your own...i just think people need to be careful linking things that may not be related to each other...concrete proof is needed to show that such links exist...

best of luck in your quest for answers...

jess

AndreaM
11-04-2009, 04:47 PM
Hi Jess,

What I'm really wondering is whether some people who have Scoliosis, and who later develop folate/B12 deficiencies, have both their conditions as a result of undiagnosed (and mild) Homocystinuria. Usually this condition is obvious at birth and is linked to Marfan type symptoms. However, for those who only inherited one defective gene, they can have a much milder form of Homocystinuria which may not even be evident until adulthood. As well as skeletal problems and tooth-crowding, these people are at a higher risk of developing folate/B12 deficiencies.

However, despite this information being out there, I've never heard of medical professionals suggesting a possible link between Homocystinuria, Scoliosis and Folate/B12 deficiencies. This made me wonder how high the incidence is of Scoliosis sufferers having these other problems. The small poll I referred to suggested a possible higher incidence of Scoliosis than would be expected in those with B12 deficiency. It would be interesting to see if the same was evident by asking the same question in reverse.

The invention of the internet has been a priceless asset for those of us who have had to find our own answers to what is wrong with us. The last nine months have been a real eye-opener and made me fully aware that the people we look to for treatment often don't have anywhere near the information and knowledge that we credit them with.

I'm sure that there must be some people on here who have B12 deficiency, either diagnosed or otherwise. Whether that is connected to Homocystinuria, or NSAIDs and acid-suppressants, is anyone's guess but, if even one person recognises themselves from the above list of symptoms, it will have been worthwhile.

When we have one condition, doctors love to try and associate any others with it and often miss a completely unrelated condition because they have stopped looking.

I hope to be able to manage to persuade doctors to test me for Homocystinuria. If it turned out to be there, it would probably explain my Scoliosis too and at least I'd have a definitive reason for all my problems.

Andrea

rainbow2010
11-19-2009, 11:53 AM
I developed a B12 dificiency at age 40. I accidentially breathed in carpet cleaner and had a severe allergic reaction. I took b12 shots for a couple of weeks and now I take B12 tables everyday. If I don't take tahm, I get rundown very easily.

Bigbluefrog
11-21-2009, 10:51 PM
popping vitamin b12 right now...I have many of those symptoms.....

how do you get tested for it>? not sure if my daughter has it either.

AndreaM
11-22-2009, 08:57 AM
The test, I believe, for Homocystinuria would be a blood sample to check both Homocysteine and Methylmalonic Acid (MMA) levels within a full biochemistry profile. In the event that these levels were raised, you could be suffering from either mild Homocystinuria or Vitamin B12 deficiency. There are many causes of B12 deficiency but most of them are a problem with absorption and would likely result in a low serum B12 level. Since Homocystinuria is a defect in a certain gene in the Methylation Cycle, it would not necessarily result in a depleted serum B12 level but would prevent B12 being converted into its active form later on in the process. It would, though, almost certainly cause elevated levels of Homocysteine and MMA and this blood test would pick that up.

I have now had these levels checked but, as I have been on aggressive folate and B12 therapy for the last nine months, any elevated level has probably been corrected and I'm not holding out much hope that I'll get a definite answer.

In your own case, I'd recommend that you get the following tests done if you can:

1. Red Cell Folate
2. Ferritin
3. Serum B12
4. Homocysteine (Hcy)
5. Methylmalonic Acid (MMA) or Urinary Methylmalonic Acid (uMMA).

If it showed that Serum B12 was normal but Hcy and/or MMA was high, then you are likely to have a Methylation Cycle defect causing folate/B12 deficiency.

Andrea

kidbusiness2
12-12-2010, 05:17 PM
i just read your thread entirely. I have almost all of these things wrong with me right now. The Dr. is currently wondering if it was/is a D deficiency. I will have to check into this and be tested the way it sounds. I hate living like this & it is affecting every aspect of my life. Thanks for the info.

Julie

Elisa
12-12-2010, 06:21 PM
Wow Andrea, you sure have been through the wringer with all those crazy symptoms. I will definitely be keeping a close eye on my son who has scoliosis to see if he develops any of the symptoms you have/had. I hope you are feeling better these days and yes it is wonderful to have the Net so we can look further into these types of problems.

AndreaM
12-15-2010, 06:34 AM
Hi Julie & Elisa,

I am keeping as well as I am ever going to since some of the symptoms are permanent. I have completely lost bowel and bladder function due to the nerve damage and that is not expected to repair. Neither is the damage to my leg or the episodes of excruciating nerve pain in that leg.

I have never managed to reduce my treatment so still self-inject B12 three times a week but the difference to my health compared to two years ago is amazing. I am pretty sure I would have died last year had I not discovered my problem.

Julie, ask to have the following tests done:

1. Red Cell Folate
2. Ferritin
3. Serum B12 (or better still Plasma B12 which gives a more accurate result).
4. Homocysteine
5. Methylmalonic Acid (MMA or uMMA)

Also ask what your MCV result is. If raised, this suggests Macrocytosis which is often present in B12 deficiency but can give a false normal result if there is coexisting iron deficiency.

You will get a lot more information at the following website:

www.pernicious-anaemia-society.org

Andrea

mamamax
12-15-2010, 10:17 PM
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.

AndreaM
12-16-2010, 04:36 AM
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.

AndreaM
01-26-2011, 07:30 AM
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
01-26-2011, 12:15 PM
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
01-27-2011, 02:37 PM
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
01-29-2011, 07:55 AM
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
01-30-2011, 09:41 AM
It is my pleasure Darrin.

Andrea

pmc
01-31-2011, 05:26 PM
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/vitamin-b12-injections.html

AndreaM
01-31-2011, 05:55 PM
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/index.php?l=product_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
01-31-2011, 06:29 PM
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!!

Karen Ocker
01-31-2011, 06:50 PM
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/onpinews/newsitem.aspx?RecordID=6015

AndreaM
02-01-2011, 05:33 AM
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.

rohrer01
02-02-2011, 05:58 PM
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
02-03-2011, 07:02 AM
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
02-04-2011, 11:30 AM
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
02-04-2011, 01:40 PM
Rohrer,

Recurrent miscarriage is is a recognised result of untreated B12 deficiency. Usually the loss occurs by about 10 weeks or so. The folic acid will help but it will also allow any B12 deficiency which exists to continue on causing damage.

If I were you, I'd really try to get this properly tested and it would do no harm to allow you a trial course of injections to see if they helped. You cannot overdose on B12 so don't be afraid to try it. It is even more important to continue to take it throughout any pregnancy as well as the folic acid to ensure you do not miscarry for that reason and also to ensure the baby is not born already deficient.

Have a read of this: http://www.pernicious-anaemia-society.org/phpbb/viewtopic.php?t=10324&view=next&sid=02a5f20e2f56e6d015f6a4c7d5a1c724

rohrer01
02-04-2011, 03:16 PM
Thanks, Andrea!

This is some interesting information. I've had 6 miscarriages and 3 successful pregnancies. I wonder if other scoli-moms have a higher incidence of mc as well???

AndreaM
02-05-2011, 11:37 AM
I wonder if other scoli-moms have a higher incidence of mc as well???

Yes, it would be very interesting to know this.

I had no problem conceiving or carrying full-term but I didn't have any symptoms at that point. It wasn't until my second child was just 18 months old that I was suddenly hit with all sorts of problems. However, looking back I see that I did have symptoms of B12/folate deficiency throughout both pregnancies and post-partum haemmorhage after the first one, which is also a very typical problem in B12-deficient mothers. Many women experience their first obvious symptoms just after a pregnancy, regardless of whether or not they have Scoliosis, as the baby takes what little B12 they have and accelerates the condition. The final straw is when they are given Nitrous Oxide (Gas & Air) during childbirth. Nitrous Oxide is very bad for B12 and should not be given at all to anyone who is B12 deficient. It also destroys B12 in healthy people but they are able to quickly make it up again and would only encounter problems if they were regularly exposed to it.

Pooka1
02-05-2011, 11:40 AM
Well, since we are collecting data..

1 successful pregnancy (twins)
2 MC
1 ectopic

Elisa
02-05-2011, 11:55 AM
Some more data:

3 successful full term pregnancies
0 miscarriages
0 future kids, lol.

Pooka1
02-05-2011, 11:57 AM
LOL.

I should have said I only have one twin pregnancy but three kids. I count my husband. (smiley face)

JUST KIDDING!!!

foofer
02-05-2011, 01:35 PM
1 successful stepchild (although it took many years of hard work and patience :))
3 successful full term pregnancies, the first two were C- sections
1 miscarriage
1 husband
____________

= 6 ....whoa, no wonder I'm tired

AndreaM
02-05-2011, 01:58 PM
0 future kids, lol.


I should have said I only have one twin pregnancy but three kids. I count my husband. (smiley face) JUST KIDDING!!!


1 successful stepchild (although it took many years of hard work and patience :))

:D :D :D

Mmm... well it looks like miscarriage is a noticeable occurrence for we Scoliotic mothers. My own mother (who doesn't have Scoliosis and had five other trouble-free pregnancies) told me that she bled constantly with me and had a really horrible pregnancy. I suspect my father was the one who passed on the defective gene and perhaps this is what was my Mum's body was fighting against. I'm also rhesus negative. Who knows?

Pooka1
02-05-2011, 01:58 PM
Actually the rate of miscarriage is pretty high for everyone, not just mothers of kids with scoliosis. A quick scan shows it to be ~15-20% of known pregnancies and another study showed it to the about 1/3 of all pregnancies.

This high loss rate may reflect how many things an go wrong in early gestation.

It is also why it has been correctly point out the the most prolific abortionist is any deity that might be out there, NOT any OB/GYN.

rohrer01
02-05-2011, 06:07 PM
My question may have been misunderstood. I meant how many moms that have scoliosis have recurrent mc's? (I also have a scolichild)... The other information is also useful.

AndreaM
02-05-2011, 06:53 PM
Hi rohrer,

I took it that's what you meant. I also see from a comment you made on another thread about magnesium that you have trouble falling asleep. This is yet another symptom of B12 deficiency. It interferes with the production of the sleep hormones and, even although you feel exhausted, you can't physically fall asleep, not helped of course by the frequent leg cramps and maybe jerking limbs which start minutes after lying down.

Prior to me starting B12 treatment, I had to knock myself out with strong painkillers just to try to get a couple of hours sleep and peace from the excruciating leg cramps.

Andrea

rohrer01
02-05-2011, 08:25 PM
Yes, sleep is an issue along with exhaustion. I don't get leg cramps, though. I do jerk awake which is really annoying. I get really bad muscle spasms in my back. Ouch!

Doreen1
08-16-2011, 07:36 PM
June of last year I went to PCP because I was experience multiple symptoms: dizziness, loss of memory, exhaustion, twitching, etc. Doc felt I had all the symptoms of MS. After many tests, a neurologist determined I was low on B12. I've been doing weekly injections of 1,000mcg which have helped tremendously. Nascobal is a B12 nasal spray that I alternate with the injections because I loathe the shots. Since Nascobal only comes in 500mcg dose, one week is x1 shot 1,000mcg, next week is two sprays of Nascobal x500mcg each.

It wasn't until I joined this forum that I started thinking there was a correlation between scoliosis and B12 deficiency. I'm also low on vit D; measured 33 on the normal range of 32-100 and am seeing an endocrinologist next week.

In regards to pregnancies, I had x2 full term and x2 MC.

Warmly,
Doreen

AndreaM
11-16-2012, 10:18 AM
At the beginning of this thread I mentioned a condition called Homocystinuria, and how I suspected I may have a form of it. After four years of perseverance, I have finally managed to get the genetic testing done and - yes - I do have the condition.

I have been subjected to ridicule, scepticism and resistance from the medical profession and others and it is most satisfying to now have the actual proof that I was right all along. I have various mutations in some of the genes in the methylation cycle, including two in the CBS gene responsible for homocystinuria.

It now gives me answers as to why I have scoliosis, tooth-crowding, severe functional deficiencies of B12 and folate and an inability to detoxify heavy metals. It also may explain mental retardation, eye problems and seizures in one of my brothers.

As to the scoliosis, it is one of the possible symptoms of homocystinuria but it isn't known why it develops. However, a possible explanation may be that a build-up of heavy metals (particularly mercury) occurs, as it did in me, and mercury is already known to affect skeletal muscle fibres.

At last I now have neurologists, biochemists and endocrinologists working with me, rather than against me, and congratulating me for my tenacity in refusing to be put off.

jillw
11-16-2012, 10:01 PM
Wow, thank goodness you tracked that down. Thanks for sharIng your uPdate. It may prove very helpful to some people.

mariaf
11-17-2012, 07:10 AM
Actually the rate of miscarriage is pretty high for everyone, not just mothers of kids with scoliosis. A quick scan shows it to be ~15-20% of known pregnancies and another study showed it to the about 1/3 of all pregnancies.

This high loss rate may reflect how many things an go wrong in early gestation.

It is also why it has been correctly point out the the most prolific abortionist is any deity that might be out there, NOT any OB/GYN.

Good point. I, myself, do not have scoliosis and have had 3 children (2 by C-Section). I also had a miscarraige between my 2nd and 3rd child. So that seems in keeping with what most mothers (scoliosis and non-scoliosis) experience - and pretty much around where the data points (somewhere between every one in five pregnancies resulting in miscarriage, to every one in three resulting in miscarraige).

My daughter (2nd child) was also 4 weeks early. I think that more often than there being a reason, most times these things 'just happen' and nobody, including the doctors, knows why.

flerc
11-20-2012, 11:19 PM
mercury is already known to affect skeletal muscle fibres.


It seems to be difficult to avoid it since seas are contaminated. Which is the best chelation method? Not everyone likes cilantro, onion or garlic. I'm buying spirulina but I'm not sure if it is safe.

AndreaM
11-21-2012, 07:21 AM
It seems to be difficult to avoid it since seas are contaminated

By far the worst source is dental amalgam as it is right in your mouth in substantial amounts, giving a constant low-level trickle feed of mercury vapour into your surrounding tissue and lungs.


Which is the best chelation method?

The subject of chelation is a minefield and I personally would not recommend tackling it without proper supervision. Some people use chelating agents but they are not predictable and can redistribute the mercury if not done properly. Also, some people don't react well to them. Rather than go into a lengthy explanation, I suggest you read the following topic: http://www.scoliosis.org/forum/showthread.php?11937-Scoliosis-amp-Heavy-Metal-Allergy

You will see that I attracted some quite negative responses, and indeed some posts were removed from the end of the topic (although I do still have a copy of them) but, for me, I now see that due to the nature of the defects I have, it was vital for me to remove as much mercury as possible from my body as I can't personally detoxify it.

Just be careful with spirulina. Although it is one ingredient sometimes advised for chelation, it also contains a B12 analog which mimics VitB12 but is thought to stop the absorption of true B12 from your food. This means that if you have difficulty metabolising B12, you may well make a deficiency worse but it will not be reflected in your serum level as it will still show up in a serum test as B12 due to the test not being able to differentiate between true B12 and the other much greater inert portion called haptocorrin.

AndreaM
11-21-2012, 10:09 AM
I thought is relevant to include the following article about Homocystinuria. It is from the Metabolic Disorders Unit of a children's hospital in Ireland, which is quite appropriate since the prevalence of homocystinuria in Ireland is much greater than the general worldwide prevalence - 1 in 65,000 as opposed to 1 in 344,000 (although the article does indicate that these figures may be underestimated).

Of particular interest is the fact that scoliosis is indicated as a frequent abnormality in these children, and kyphosis as a less frequent one (see page 3):

https://www.orpha.net/data/patho/GB/uk-CbS.pdf

AndreaM
11-23-2012, 03:08 PM
Another summary of homocystinuria and the presence of scoliosis:

http://www.empowher.com/media/reference/homocystinuria

flerc
11-24-2012, 12:59 PM
By far the worst source is dental amalgam as it is right in your mouth in substantial amounts, giving a constant low-level trickle feed of mercury vapour into your surrounding tissue and lungs.


Yes, I was thinking time ago in remove it from my mouth.. fortunatelly my sons haven't ammalgams with mercury and are not used any more, only by some few dentists.. the problem is that other other kind of amalgams seems to be safe but ineffective.



The subject of chelation is a minefield and I personally would not recommend tackling it without proper supervision. Some people use chelating agents but they are not predictable and can redistribute the mercury if not done properly. Also, some people don't react well to them. Rather than go into a lengthy explanation, I suggest you read the following topic: http://www.scoliosis.org/forum/showthread.php?11937-Scoliosis-amp-Heavy-Metal-Allergy

You will see that I attracted some quite negative responses, and indeed some posts were removed from the end of the topic (although I do still have a copy of them) but, for me, I now see that due to the nature of the defects I have, it was vital for me to remove as much mercury as possible from my body as I can't personally detoxify it.


Of course it not surprise me, is what that people does. Fortunately you continuos here.
I'm looking about that kind of information since months ago. Heavy metals seems to be terrible and I'm worry because my daughter eats considerable amounts of atun. I agree because is surely her main source of B12, but surely is contaminated.. I doubt so much about the quality of the B12 in milk and she don't eat liver.



Just be careful with spirulina. Although it is one ingredient sometimes advised for chelation, it also contains a B12 analog which mimics VitB12 but is thought to stop the absorption of true B12 from your food. This means that if you have difficulty metabolising B12, you may well make a deficiency worse but it will not be reflected in your serum level as it will still show up in a serum test as B12 due to the test not being able to differentiate between true B12 and the other much greater inert portion called haptocorrin.

I knew is not assimilable by humans, but not that can block his absortion.. it would really very dangerous.. I have read that is the main part of the astronaut's diet because nothing has so many nutrients in so few space.. I was thinking in chlorella, but I don't like the fact that the walls must to be broken in order to may be assimilable.. and new super algaes are so much new.

AndreaM
11-24-2012, 01:52 PM
fortunatelly my sons haven't ammalgams with mercury and are not used any more, only by some few dentists.. the problem is that other other kind of amalgams seems to be safe but ineffective

In the UK, dental amalgam is still the only one used by our medical profession and if you want a different kind you have to go to a private dentist and they are very expensive. I have ones now which are resin or porcelain. The porcelain ones were made in California. I've had them now for 18 months and I still eat hard toffee etc. but am careful not to put too much pressure on them.

I'm glad your son doesn't have amalgam. My children do because that's all that was available and I didn't know about the dangers then. Unfortunately, my son, who is 19, recently had a medical for the army and they picked up mild scoliosis so he is clearly affected too. Because he is still apparently healthy in all other ways, he isn't bothered by it but I can't help worrying about what will happen to him in later years. Apart from the scoliosis, I was healthy too when I was his age.

flerc
11-24-2012, 09:42 PM
I believe that amalgams of resin are bad.. a dentist said me that filtrations are inevitable, something that have not happened with those with mercury.. I believe that mercury in vaccines is even worst. Surely those of porcelain are the best and safe.

Sorry for the scoliosis of your son, but surely is dificult that could progress now so much, fortunately is not a girl..it seems that hormone differences makes the disadvantage for women.
Anyway I believe that trying to keep good health is very important, so I'm looking for the best nutrition diet and detoxing methods, the best way to manage emotions, for doing activities, exercises.. nothing simple to find.