Scoliosis & Heavy Metal Allergy

[Pooka1]

Would a revision have spared you all the pain and nerve damage?

I wonder if demyelation of spinal nerves and loss of bladder control are known consequences of not treating nerve pain.

I recently read that a woman seems to have permanent nerve damage in her pelvis due to nerve damage done while taking donor bone for her fusion. I had previously decided I wouldn't allow that with my kids. But if I had known that, I would have been constantly reminding everyone and their mother on that surgical floor I did NOT want that for my kid.

[AndreaM]

[COLOR="#4169e1"]perhaps you feel threatened by those who question the cause you seek to prove

I'm not seeking to prove anything! I don't know any more than any others on here about the accuracy of mercury causing Scoliosis but I have not ruled it out. I just feel that, in my own case at least, this is worth investigating and I'm sure there are plenty of others in the same situation as me trying to find an answer to their ongoing problems.

Just because a website isn't able to back up their ideas with scientific proof doesn't, in itself, mean they are not onto something. It is not the websites themselves, the people who run them, or the claims being made on them, which interest me, it is the notion that heavy metal allergy could lead to various illnesses and that sounds very plausible to me regardless of who is making the suggestion. It doesn't mean I am endorsing everything on these websites, just considering the general idea.

[AndreaM]

Would a revision have spared you all the pain and nerve damage?

What is a revision? All I had was a fusion, with bone taken from both hips. The rod was never comfortable and loosened after a few months (probably due to the fact that I bought a motor bike as soon as I was out of plaster and crashed into a car bringing it home!). The rod had to be removed a year after it was put in and I was left with pain at the base of my spine. Not nerve pain, but general pain from inflammation down the backs of both legs from scar tissue around the opening where the sciatic nerve comes out.

The nerve pain started very suddenly 15 years later and is generally thought to have occurred from demyelination arising from the B12 deficiency, similar to what happens in MS. It is the demyelination which has caused damage to the sacral nerve which supplies bowel and bladder. Demyelination is a very gradual process and by the time you feel nerve pain (like electric shocks or stabbing pains), the damage is quite advanced. So, something was causing the demyelination long before I had any symptoms. With true B12 deficiency, you usually have all the symptoms of that which eventually progresses into demyelination. Mine happened in reverse and metal allergy destroying my glutathione level certainly fits with the pattern of damage and explains why, despite not having a serum B12 deficiency, I responded very well to supplementation.

[Pooka1]

What is a revision? All I had was a fusion, with bone taken from both hips. The rod was never comfortable and loosened after a few months (probably due to the fact that I bought a motor bike as soon as I was out of plaster and crashed into a car bringing it home!). The rod had to be removed a year after it was put in and I was left with pain at the base of my spine. Not nerve pain, but general pain from inflammation down the backs of both legs from scar tissue around the opening where the sciatic nerve comes out.

Were you fused successfully at that point? If the crash loosened your rod then why didn't they do a revision? Did you have a lumbar fusion that extended below L3? That could explain the pain at the base of your spine. There is a countdown although if that is what you are dealing with, it sounds very fast.

The nerve pain started very suddenly 15 years later and is generally thought to have occurred from demyelination arising from the B12 deficiency, similar to what happens in MS. It is the demyelination which has caused damage to the sacral nerve which supplies bowel and bladder. Demyelination is a very gradual process and by the time you feel nerve pain (like electric shocks or stabbing pains), the damage is quite advanced. So, something was causing the demyelination long before I had any symptoms. With true B12 deficiency, you usually have all the symptoms of that which eventually progresses into demyelination. Mine happened in reverse and metal allergy destroying my glutathione level certainly fits with the pattern of damage and explains why, despite not having a serum B12 deficiency, I responded very well to supplementation.

Well actually my horse is on thyroid hormone and responds even though he almost certainly does not have a deficiency so I think that is hypothetically possible to respond to B12 even if you don't have a deficiency.

Is the reason you are fishing around for unusual diagnoses because they ruled out MS in your case if I might ask?

I don't know what the hell I'm talking about but let's see where this goes.

[AndreaM]

Were you fused successfully at that point? If the crash loosened your rod then why didn't they do a revision? Did you have a lumbar fusion that extended below L3? That could explain the pain at the base of your spine. There is a countdown although if that is what you are dealing with, it sounds very fast.

I'm afraid I don't know any of the above lingo regarding Scoliosis. All I know is that I had one rod which was fixed from the 8th vertebra down from my neck to the 2nd last one at the base of my spine. I had tender spots which were checked out and seemed to settle. They told me that the pain at the base of my spine was due to scar tissue and I had a further operation a year after having the rod removed to widen the area where the nerves came out. It made no difference at all to the pain. However, despite the pain, I was able to lead a near normal life and managed to have two normal pregnancies, although needed C-sections for both of them.

I think that is hypothetically possible to respond to B12 even if you don't have a deficiency

It is possible to have a tissue deficiency which doesn't show in a serum test and this is usually due to a Methylation Cycle defect such as Homocystinuria. These defects need the greatest amount of B12 and folate to manage them. This is what I initially thought I may have and Scoliosis and tooth-crowding (which I also have) are two of the possible symptoms of this condition. So are mental retardation and eye problems which are present in one of my brothers.

Is the reason you are fishing around for unusual diagnoses because they ruled out MS in your case if I might ask?

I'm not fishing around for 'unusual diagnoses' - I'm trying to find out what my actual diagnosis is! And since the medical profession hasn't a clue, I'm on my own with this.
Since I had very similar symptoms to MS, I was at one point tested for it but never heard anything more so can only assume there was no evidence of it.

[rohrer01]

See the thread entitled "fish?" under the research section. Quite interesting and I think applicable to this discussion.

[livingtwisted]

I don't intend to post again here as I have limited time and would rather use it to help others who are still open to other possible explanations for their health problems. I'm just sorry that others can't at least keep an open mind and see how someone else fares on a new sort of treatment even if they don't feel confident of its relevance.

Well I wouldn't blame you if you stop -- it sounds like you have enough to deal with without being judged by strangers. But there are some people here open to these discussions. Obviously your situation is unique and it must be really frustrating not knowing what's causing all of these problems or having anyone who is in the same boat with you. If doctors don't have the answers, you absolutely need to do whatever you can to help them find those answers. Good luck and please share any progress updates if you feel comfortable.

[Ballet Mom]

Andrea, I'm sorry you are having such health problems. It is terrible when you have an undiagnosed condition and doctors are unable to come up with a diagnosis and treatment plan.

I have to agree with others who have responded that it would seem to be very unlikely that mercury is causing scoliosis. It seems that it would easily be determined by those in Minimata Bay in Japan who received severe mercury poisoning from industrial pollution. What happened to the rate of scoliosis in the areas affected? I see lots of central nervous system damage to those affected, but no mention of scoliosis. Even in the babies born the symptoms were severe deformities, including gnarled limbs, mental retardation, deafness, and blindness. No scoliosis mentioned. And as rohrer and concerned dad point out in the other thread, Japanese apparently have a lower rate of scoliosis than others.

Also, scoliosis has been around long before amalgam fillings were in use and you would think there would be less scoliosis in areas where there is poor dental care. Has your professor (who apparently holds the patent and receives royalties on that MELISA test) looked into that to validate her findings?

It also doesn't explain why so many people with lax joints end up getting scoliosis. Do they have more dental fillings? My daughter doesn't have any fillings, she got braces after she was diagnosed with scoliosis, and I only had two very small silver fillings that were popped out and replaced with non-amalgam fillings long before I got pregnant with my daughter.

While, it certainly doesn't rule out the possibility, it certainly does seem like a reach to conclude that scoliosis is caused by dental amalgams. And it certainly seems like it could be determined conclusively one way or the other quite easily, especially by looking at the folks affected by mercury poisoning in Japan.

Good luck in your journey, I hope you are able to discover whatever it is that is ailing you.

[Ballet Mom]

Oh, I also wanted to point out that Japan also removed thiomersal-containing vaccines quite a few years ago and they continue to have an increase in autism which seems to dispel the notion that thiomersal in vaccines is responsible for the increase in autism and other disorders.

(Actually, Japan banned the MMR vaccine. Canada has not had thiomersal in most vaccines since the 1960s, apparently, and they still have scoliosis and autism as far as I can tell). :-)

[jrnyc]

Andrea...you didn't follow up on the MS question?
all due respect...but i think it would be MOST advisable to do so!!!

when i was deathly sick with Lyme, some Lyme patients were misdiagnosed with ALS and with MS...there were a lot of cross diagnoses!
the patients who responded well to extensive IV antibiotics were removed from the list of ALS and of MS diagnoses....as bad as Lyme can get, they were very relieved....

i went for a year and a half with doctors, most all male, telling me i was crazy, a hypochondriac, etc, but was not sick..only because they didn't know what to test for...as soon as they tested for Lyme, it popped up off the charts positive!
i learned then how many crappy doctors there are in the world, and haven't had much faith in medicine since then!

i would refuse to take "no diagnosis"...and would keep looking until i got one!
i never believed the "doctors" who told me i wasn't sick!

"modern medicine" has a long way to go...
few who have gotten the short end from medicine have much faith in most doctors!

i hope you find a good doctor who won't give up til he figures it out for you!

jess

[Pooka1]

I'm afraid I don't know any of the above lingo regarding Scoliosis. All I know is that I had one rod which was fixed from the 8th vertebra down from my neck to the 2nd last one at the base of my spine.

Okay so it seems you have a Harrington rod from T8 to L5. That is a TL and L fusion as far as I know. Lumbar fusions with Harrington rods are known to be problematic from flatback syndrome. You started a countdown for when the disk below L5 would fail. It sounds like it failed but you didn't get a revision.

I had tender spots which were checked out and seemed to settle. They told me that the pain at the base of my spine was due to scar tissue and I had a further operation a year after having the rod removed to widen the area where the nerves came out. It made no difference at all to the pain.

Did anyone mention the health of the disc at L5-S1 at any point? This is not a mystery coming out of the blue but rather and can be predicted to occur. It further sounds like they operated on you for stenosis and it didn't work. That would be in keeping with the problem being the disc and not stenosis but I can't possibly know that. I am raising spitting in the wind to operatic levels at the moment. (smiley face)

It is possible to have a tissue deficiency which doesn't show in a serum test and this is usually due to a Methylation Cycle defect such as Homocystinuria. These defects need the greatest amount of B12 and folate to manage them. This is what I initially thought I may have and Scoliosis and tooth-crowding (which I also have) are two of the possible symptoms of this condition. So are mental retardation and eye problems which are present in one of my brothers.

Yes it sounds like you would need to rule that out. But absent the mental retardation it is my understanding you can't have homosytinuria. Also, homocystinuria is in the differential for Marfans and we had to rule it out for my twins. Maybe Marfans is in the differential for homocystinuria and you need to rule that out?

I'm not fishing around for 'unusual diagnoses' - I'm trying to find out what my actual diagnosis is! And since the medical profession hasn't a clue, I'm on my own with this.
Since I had very similar symptoms to MS, I was at one point tested for it but never heard anything more so can only assume there was no evidence of it.

Do you think it is worthwhile at this point to actually get some known expert to rule out MS for you? Did you check that the test they did is the right one? Might it be good to get a re-test if there is a high rate of false negative?

[AndreaM]

Well, firstly the MS - I can remember some years ago hearing someone (can't remember who it was but a medical person) reading a document and commenting that I had been checked for MS. In 2009, I also had an MRI scan of my entire neck and spine and this is the report my doctor copied to me:

Due to the extreme scoliosis present in the thoracic region, the examination is rather difficult to interpret. On a few axial images there is suggestion of a little high signal in the lower thoracic cord at about T10 but this is not definite. No other abnormality seen in the rest of the thoracic or cervical cord.

The lumbar region of my spine is a mess. I have prolapsed and calcified discs. I also have a small fatty lump there within the spinal canal. As a result, no-one wants to touch my spine but an orthopaedic consultant I saw said that, despite the damage which is clear on the x-rays and scans, this does not explain the other problems I have, including the nerve damage to my leg. There was nothing that he could see that could be causing the nerve damage and he didn't feel it would be wise to go into an already damaged area without good cause - and I agreed with him. So there was clearly something else wrong other than the Scoliosis which was undermining my entire health and causing damage to every part of my health.

The commencement of B12 and folic acid treatment was like a miracle and I literally sprang to life within days. I continued to keep well so long as I stayed on the level of treatment I have found I need and that was the case until I got the 'flu jab on 14th December. I keep a chart of everything I take and how well I am each day and on 16th December I had pain in both armpits and intense hip pain for several days (which is not normal for me). By the 18th, my BP had risen considerably and I have noted that I didn't feel well generally. This continued on and by Christmas I was pretty sick. My bowel had stopped altogether and I needed strong laxative powders to try to make it work. My stomach was in turmoil and I constantly brought up lots of gas. I had no appetite, felt nauseous all the time and like I was going to be sick and spent New Year's day in bed feeling absolutely lousy. Since then, I have improved slightly but my blood pressure is still haywire and is very difficult to control, going up from 116/77 one day to 155/100 the next. This all happened immediately after the 'flu jab so is it any wonder I am suspicious of it?

I have no knowledge of and therefore no answers for the incidence of scoliosis in Japan however I too would love to know the incidence of scoliosis in the children affected by the industrial mercury poisoning. For instance, were they followed up into their teens at which time they would normally develop scoliosis? When there is a major health catastrophe thought to be caused by a preparation from either a chemical or pharmaceutical company, it is nigh impossible to get anywhere. They wield such power that it's almost impossible to successfully challenge them and, even then, it's only when the proof is indisputable and that's rarely possible.

As I've said before, this test may come to nothing and I am quite prepared for that. If this is the case then I shall continue to pursue the Homocystinuria route and I have the medical profession's cooperation in this. I do know of Lyme's disease, although I haven't been tested for it, but I am fairly sure this is not my problem and have had many courses of antibiotics over the last 20 years which should have eradicated it anyway. My first symptoms were nerve damage before I had any other general feelings of being unwell so something was attacking my central nervous system long before I noticed any other symptoms.

I've just checked back to the 'flu jab I had the previous year and notice that a fortnight after it, my BP rose enough for me to take a tablet for it and I needed a few more until it settled down again by April 2010. On that occasion, I had two separate injections 10 days apart - one for ordinary 'flu and one for swine 'flu. This year, the two were combined in the one vaccine and I wonder if this increased the reaction I had to it.

Well, who knows? I'm not making any claims - all I'm doing is getting tested for my own peace of mind and I will update this thread when I get an answer one way or the other.

PS - Just found out today that Thimerosal is also in contact lens cleaning solution so now folks are getting it into their eyes as well!

[rohrer01]

Andrea,
It is common for people to get mild flulike symptoms after a flu vaccine. Some people, like my sister downright get the flu. Maybe this is the case with you. Sickness can play havoc with BP, heart rate and overall well being.

Also wondering if you are on any antidepressants. The reason I ask is because I have been on a couple of them and had heart and BP problems. The BP was as you describe. It turns out that I have an underlying heart arrythmia and can't take ANY antidepressants. It really stinks because I think that I could benefit from antidepressant therapy AND it states on the welcome page of this site that Cymbalta has been approved for treating scoliosis pain. It might be worth invesitgating whether or not you have a heart condition by getting a full cardio workup as this could explain your BP problems. Have you kept record of your heart rate? There have been times that I have just felt EXTREMELY exhausted (could barely stand) with no seemingly plausible explanation. Then I take my pulse and it's clipping along at around 160 - 180 beats per minute. I'm supposed to be on a beta blocker for the condition, but they give me chest pain, so I choose to deal with the tachycardia.

Also, I think Pooka1 might be on to something with your lower disc. If you have so many lower spine problems, it might be worth more investigation with a second opinion. Sometimes they can just suck out part of a disc that is protruding. Also, since your scoliosis is so bad that it is difficult to get a good look with an MRI, they may be able to do a myelogram/CT scan to get a clearer look. You will need to be seen by a neurosurgeon for this. Although the risk for this is a lot of radiation exposure and with the myelogram part they do like a spinal tap and replace the spinal fluid with a dye that really makes things visible on the CT scan. You can get a massive headache from this that lasts for about a week or two (personal experience), but the results may be worth your while to get an accurate diagnosis. I'm not sure what other tests they can do for your sacral nerves to check the health of them. Maybe someone else on here can chime in and give some advice on that.

As far as the heavy metal (mercury) poisoning, check out the thread entitled "fish?" under the research section. You will find it very informative.

I really hope you get some answers. I have had nerve pain in my hips and legs and it really stinks! Keeping you in my thoughts. (((HUGS)))

[AndreaM]

Hi,

I'm not an any antidepressants and never have been. I did have a slight heart murmur the times my BP was out of control but my heart was properly checked out when I first began having all these symptoms and there was no explanation for my sudden high BP. Even with it controlled, my heart pounded all the time as if it was really struggling to keep going and I had slight pains around the heart area for years. My pulse has always remained within a normal rate.

However, within a week of starting the B12, my BP returned completely to normal and I was able to stop the BP med immediately and completely for two years. The only times it instantly rose again was the twice I tried to extend the time between my B12 injections and, now I've discovered, the last twice I've had the 'flu jab. The symptoms I experienced after the jab are not like 'flu and they come and go from day to day. Overall, I am definitely better than I was in the first month or so, but the symptoms can return quickly and of course my BP has never settled again. I am not an anxious person and have no particular symptoms of high BP but I am so used to monitoring it at home because I had to all these years that I still regularly check it and that's how I caught it so quickly when it rose dramatically in December. I am as sure as I can be that something in the 'flu vaccine disagrees with me and the effects are long lasting.

One other factor which occurs to me is that I was also taking the Methylcobalamin form of B12 at the time I had the jab and this active form of B12 is reckoned to also activate mercury and make it more potent. Perhaps this is why I reacted even more seriously to the jab than the previous year. Since I didn't keep a written record during the years when I was so unwell, I can't tell if I reacted badly when having a dental filling replaced. I was just so ill all the time that I don't think I'd have noticed anything different and would just have thought it all part of what was wrong.

Although my lumbar spine is so damaged, I don't actually get a lot of trouble with it. I have always had to take anti-inflammatory med to control the general pain but it hasn't got any worse and I am not on a lot of these pills to keep it under control. Neither do I get back pain. All my problems seem to be from damage to my spinal cord which cannot be blamed on my scoliosis so I am very reluctant to let anyone interfere with my spine when it is not causing me any particular problems.

I will read the thread you refer to and see if I can glean anything further from it.

[livingtwisted]

PS - Just found out today that Thimerosal is also in contact lens cleaning solution so now folks are getting it into their eyes as well!

FYI, I checked my contact solution bottle this am and it specifically said "Contains no thimerosal". It's just a store brand multi-purpose soft contact cleaning solution. So they don't all contain thimerosal.