MS may be due to simple jaw problem - Seek a spinal symmetry evaluation before starting drug treatment!

New diagnosis and before diagnosis
61

I wonder if EJC would like to reconsider the last statement. There is no secret about what is in Copaxone:
It is a random polymer of four amino acids (tyrosine, alanine, lysine, and glutamic acid) that are found in the basic protein structure of myelin. Myelin is, of course, the insulating sheath around an axon. If you really want to get into the transmission of nerve impulses, along axons and across synapses, I can recommend a good basic text.

Of course, given the correspondence between Jenny Cornell and the MS Society - published on the “themsforum.org” website, you may not really want to know the technicalities. I note that the OP referred to “recycled cancer drugs” being used to treat MS. Since Copaxone does not appear to come into this category, it would be very informative if we (that is the members of this forum) could be told which drugs are in fact recycled cancer drugs.

Geoff

62

I see reinforcements have arrived. How nice.

I am not going to get into a debate about any supposed improvements to any patients (although I could quite easily provide you with a list of alternative reasons that are contrary to the proponents’ beliefs), however someone mentioned a doctor. Here I am. I have a PhD in neuroscience. I believe, therefore, that I am at least modestly qualified to give an opinion on the theory underlying this treatment.

I have chosen a snippet from the website that EJC normally frequents. It appears to be a direct quote from the orthodontist himself:

"I believe that most “MS lesions” are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.

The immune system tries to get rid of this fluid which is in the wrong place but is unable to do so and the deposits calcify leading to the typical opaque lesions seen on MRI and CAT scans. At autopsy the increased immune function is wrongly diagnosed as an auto immune disorder."

And here is my opinion: I have never read such utter rubbish in my life!

The CSF leak part of the theory is ridiculous. I think that we are being asked to believe that pools of CSF lead to some sort of inflammatory response which leads to calcification of the surrounding tissue - much like a broken bone can heal with extra boney growth around it. (I assume this because I cannot believe that anyone even remotely medically aware would suggest that CSF carries calcium into the brain?? - the only other possibility underlying this “idea”.) I will simply point out that, not only is the brain actually bathed in CSF, it moves constantly, is replaced several times a day and is not harmful to brain tissue, calcification is not part of the MS processes! (Incidentally what on earth has connective tissue (stoma) to do with anything?) But we come to the crux of the first sentence: the idea that MS lesions do not involve neurons. This is absolutely laughable! The word demyelination refers to the loss of the myelin coating of axons - axons being part of neurons. You cannot get much more neural than that! Moreover, demyelination is a fact. It is readily visible in wet tissue (i.e. actual brain matter) and there is no way that an expert could not tell the difference between it and calcified tissue.

Furthermore, the orthodontist clearly has no understanding of MRI. For a start, MS lesions look bright / white on T2 scans while calcification looks dark / black. There is no way that a radiologist would get the two confused. We get a glimpse into why the error has been made with the phrase “opaque lesions”. OH DEAR! Clearly someone isn’t aware that what shade of gray different types of matter appear on MRI depends on which settings are used to acquire the images. And yep, demyelination and calcification do not look the same on images taken with the same settings.

So there we have it.

The whole thing is based on outrageous and nonsensical speculation and gobbledegook. One thing is it not is science.

63

I find it truly amazing that you have had an ‘MS’ diagnosis for 22 years and this is the first time that you have posted on this forum. Truly unbelievable. This is the first place I came to when I started with symptoms at the beginning of the year and is the only forum I use. As I said before, truly and utterly unbelievable. I haven’t even bothered looking at the link you’ve posted.

64

Sorry for the font colours going wonky. Not sure how that happened. It should all be blue - much like the language I used when I first read the quote… along the lines of “OMG! OMG! OMG! I have never read such [lots of filtered words]!. How can anyone believe this [lots of filtered words!]?!” You get the drift :slight_smile:

65

read a wee bit of this post and thought id throw my bit in.

It is true that i am not sure about the “jaw theory”

what i am sure about is i like to listen to all the theories that might offer an explanation to what causes the disease.

I like to cling onto any hope that i can.That one day i might get better and i can live a full day without MS creeping into my thoughts. The fact is that there is no one on the planet that can pin point that exact cause of it at this time.

Another fact is that all the current treatments of MS via the health service are not the answer, ive never heard of one person thats been cured due to Tysabri etc. I do feel that they are useful though.

I dont want to seem them get close, i want to see them get it right, and i know its not easy.

I look on the internet every single day, i look to see if anythings changed, and every new theory i hear i always hope its right.

66

A couple of months ago I rang the Essential Health Clinic in Scotland to ask about CCSVI. I don’t have an MS diagnosis so they said they could not screen me but the woman said they were having more success with this jaw alignment. Does anyone know about them ? - are they ‘quacks’ too ? Today I looked on their website but couldnt find anything written about this treatment.

A lot of people on this post are talking about the epson bar virus. That is supposedly also linked to hodgkins lymphoma which I had 22 years ago. I asked my neuro was there a link between that and my cervical spine issues. He told me that the Epson Barr Virus is blamed for loads of things including MS and there is no proof. Yet when you look at the Barts MS Blog they are convinced there IS a link. Because of this I wondered if I had the EB virus so I went down this route momentarily and got talking to quite an excentric man who had developed ‘potions’ to clear up the epson barr virus. He had his own website. Anyway I didnt go for them.

I was also talking to the one of my neuros about the CCSVI. He said it was rubbish noproof dangerous etc. I then said that a cardiac surgeon in this very hospital (Royal Victoria Belfast) has had it done and swears by it for his MS. My neuro shrugged his shoulders and said he could not comment on anothers treatment.

Basically what I am trying to say is that a non medical person like myself does not know who to believe. An eye surgeon friend of mine has stated that neurolgy is a guessing game. I have said before maybe MS is a symptom of several different things. Some it could be autoimmune, others it could be Epson Barr or CCSVI. Mine if I do have it could have been triggered by radiation treatment. As one neuro suspects MS and the other radiation myleopathy - Maybe they are both right!!!

I do actually enjoy these debates.

Moyna x

67

Mate, save your money. TMJ is NOT healing MS. It’s helping some people previously misdiagnosed with MS. They never had MS in the first place. The approach towards true MS sufferers is grossly misleading and potentially damaging.

68

Oh my goodness, this Dr Amir is spreading dangerous misinformation. Thank you, Karen, for that really helpful information about MRI lesions and calcification deposits.

And another fact about CSF leaks is that they obey the laws of gravity. CSF fluid can and does leak due to damage to the spinal cord but when this happens the CSF flows DOWN away from the brain resulting in a loss of CSF volume in the brain and spinal cord as the fluid seeps out into the epidural space. This gives rise to the dreaded lumbar puncture headache for example. So if you are talking about spinal mislignments causing injury to the spine and thus injuring the spinal dura resulting in a CSF leak it will NOT flow to the brain. Where it will NOT cause calcification deposits as clearly expplained by Karen.

There is no way that the CSF can leak UPWARDS. Get a grip and THINK, people…

The reality is that there are quacks and charlatans on the internet and who practice their so called “treatments” but they are preying on people’s desperation for a cure for awful diseases. MS is awful and we all wish we didn’t have it but to put yourself into the hands of someone who is cynically ripping money off you and deliberately feeding you total bunkum is putting your long term welfare and helath at serious risk.

Develop some criticial thinking skills and learn some basic medical knowledge before being so ready to believe these charlatans.

Belinda

69

I guess I didn’t make myself clear enough so I’ll say it again in fewer words…

The theory that the orthodontist (I repeat, orthodontist) has come up with effectively states that demyelination doesn’t actually happen, instead our lesions are due to calcification (sort of bony scars). What he fails to recognise is that demyelination in MS is a unarguable fact. But even if we forgo that, demyelination and calcification do not look the same on MRI.

The whole thing is utter rubbish.

70

Oy! Belinda!!! A little care with the quote function pulease!

Just to clarify, while Belinda’s post says “Rizzo wrote”, I didn’t actually say that ****, I was merely quoting it!

71

Just to clarify: At the beginning of my post above where I have quoted rizzo (Karen):

Karen did not say that “I believe that most “MS lesions” are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.”

She was quoting from Dr Amir when she wrote that. My apologies for anyconfusion.

B xx

72

I can’t answer on Jenny’s behalf ans I’m not her, (despite a number of people here thinking I am).

I visted Emma’s Neurosurgeon at East Surrey Hospital Last Monday. He was not able to expalin how Cpaxone worked or what it was. The man prescribing it was unable to explain what it did.

How is you seem to know - yet the Copaxone nurse, the Nuero and even Teva can’t answer these questions after Emma having taken the drug for over a year?

So tell me how it works, what exactly does it do? I can’t seem to get a straight answer to that question.

73

Emma has lesions, has had a lumber puncture and positive traditional diagnosis of “MS”.

The thing is, you may be absolutely right - all of this could be complete hogwash and a misdiagnosis, that may well be why Emma is responding to jaw mislalignement treatment.

That’s actually what is fundamentally being suggested, what if the vast majority of patients diagnose with “MS” are infact misdiagnosed? What if the fundamental current idicators for diagnosis are actually wrong and tens of thousands of people are being treated for a condition they don’t actually have simply becuase they fullfill a handful of criteria?

In a couple of sentences you’ve actually got across what I’m trying to suggest here. Jaw misalginment doesn’t treat, cure or do anything else to MS - the problem may actually be vast numbers of people don’t actually have MS, they’ve been misdiagnosed.

74

I looked at this post when new, folllowed the link having read the post with a degree of scepticism already present. Noted the link for request to ‘follow my story’, was straight to ‘…you are permanently banned from this forum…’. Would you care to explain?

75

Moyna’s post here highlights the very issue.

Is a cardiac surgeon more qualified than a Neurologist to comment on what is and what isn’t MS or what is and what isn’t suitable treatment?

Do any of these people actually know what MS is and why people get it? No, of cousre they don’t it’s all still a best guess.

Just take a look on this forum at any random thread and consider how so many people are in an awful limbo becasue no one can with any degree of certainty label them with the tag “MS”.

What if the there is a fundamental flaw in the accepted practice of diagnosis and current indicators?

The number of posts on this thread suggesting skeletal or vascular treatment couldn’t possibly treat MS might in fact be absolutely right, as it’s just as likely to turn out that the “MS” diagnosis was so fundamentally wrong to start with that these treatements are not for anything neurological to start with.

Now we’re starting to get somewhere.

76

To which link are you referring?

77

I eagerly await the reply to my posts, EHC.

And may I say that I am delighted to learn more about your reason for coming onto this forum. You seem to want to clarify that:

  1. Jaw realignment does nothing for MS.

  2. “Vast numbers” of us (including your wife) don’t actually have MS. (Please do have a stab at some actual numbers. It would be most enlightening. Perhaps you could also have a stab at telling us what we actually do have wrong with us?)

Incidentally, I completely agree with you that skeletol and vascular treatments do nothing for MS. Not sure how you saying that shows this thread is getting somewhere though - I believe I said something along those lines in my very first post, which you can find on page one of this thread.

One more thing: perhaps you could explain how “so many people are in an awful limbo becasue no one can with any degree of certainty label them with the tag “MS”” and yet “tens of thousands of people are being treated for a condition they don’t actually have simply becuase they fullfill a handful of criteria”?

78

Dear EJC,

When I was first ill, I had terrible spasms that pulled my body out of alignment. My knees didn’t track properly, my sinuses wouldn’t drain or resonate (I’m a singer).

You could see the spasms moving over my back, like some sort of science-fiction creature. No one knew what was wrong with me and they missed MS as they were focussing on keeping me alive as my BP had gone up to 260/160 and without treatment I was going to die.

After I was discharged from hospital - (on BP meds forever, which I don’t mind and now I’m on 4) I was in trouble with l’Hermites sign, numbness, rigid facial muscles and fatigue.

I went to see a chiropractor who working with massage and re-alignment, helped enormously. I could sing again after 6 sessions - but - these are MS symptoms. Not MS - but symptoms caused by MS.

Later, (8 years)when I got my diagnosis, I was in a mess again, with permanent knee damage, due to lack of nerve conductivity and I couldn’t lie flat, so my husband had to keep putting my hip ‘back’ so that I could lie down for the MRI.

I was able to start Rebif after my diagnosis, which slowed down my relapse rate from every 8 weeks to one every 3 years.

This controlled the relapses - SO - now this is important, that my body could recover from the previous year of hell.

Your wife’s pain and nerve pain is most likely caused by the secondary effects of MS. Seeing an osteopath or a chiropractor can really help to control the spasms and pain. My l’hermittes sign has gone as well. It went on its own.
Not everyone is the same. That’s the awful truth about MS. I’m glad your wife has responded well to jaw realignment. No one has any problem with this, but Dr Amir’s theories about MS are wrong. He really is not going to cure all those many ailments listed on the forum above. How can jaw relagnment ‘cure’ schizophrenia?

Anyone - I cannot emphasise this enough, ANYONE knows that MS manifests itself in many ways and this is what makes it so hard to treat or control.

Many people on this site take LDN. I took it for 3 years, but it no longer works for me. I still take Rebif, which is still working after 12 years and my husband helps to alleviate the muscle spasms.

I don’t eat gluten as it makes my nerve pain worse.

I’m open-minded, but not to quackery. Claiming that MS doesn’t exist - oh, did you see that one about Lyme disease? According to Owndoc.com MS doesn’t exist but is Lyme. How does that chime with Dr Amir’s claim?

Jencor was offensive in her first post. Yes, she does seem to be very angry. She may well be SPMS by now and as anyone with MS and curiosity knows, once you are SPMS the DMDs aren’t prescribed - unless you have relapsing SPMS.
Again, complicated.

I have a friend who had CCSVI treatment 3 times and her veins are clear and dilated now. However, her MS is worse. It’s not going to work for many people and it doesn’t make it a cure for MS. There is NO CURE FOR MS.

There are drugs that can stop/slow the relapse rate in RRMS/PRMS and give the MSer a better quality of life.

As for progression? No one knows for sure. I haven’t progressed in 12 years. I think that is down to luck. My neuro thinks it’s down to early treatment.

Treating horrible symptoms such as nerve pain and spasms and tracking disorders is important. Endorphins are important. Vitamin D3 supplementation is important.

MS exists. That’s it.

79

So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.

Again, let’s get some basic facts on the table. Given this is being discussed on the Newbies Forum it is terribly important that we disseminate accurate information as so many people reading this are newcomers to the whole MS field and are still at the bottom of a very steep learning curve. That is why the original post and your replies are making me so angry. Spreading misinformed garbage is incredibly irresponsible in the Forum.

Anyway, back to basic facts. You have been saying that MS lesions are not identifiable as anything specific and that they may not be indicative of any disease entity known as MS. That there is no way of testing for or definitively saying whether or not someone actually has MS and that neurologists are basically lumping people together into one basket when presenting with a range of symptoms that according to you and the dubious Dr Amir are caused by spinal and jaw misalignments.

I beg to differ. There are two absolutely definitive ways of testing for MS. By taking samples of brain tissue either at autopsy or by a brain biopsy doctors are able to very definitely identify the chemical and structural changes in an MS lesion. There are inflammatory markers, changes to the myelin sheath and to the neurons and axons that ONLY occur in MS. They may not be readily distinguishable on MRI as being different from a stroke or migraine or numerous other causes of lesions but on biopsy they most definitely have their own discreet characteristics.

Some people who present with an “atypical” form of MS are offered a brain biopsy as a way of getting a definite biopsy. (I was myself although I refused. Just a bit too invasive.) And many cases of clinically silent MS have been inadvertently discovered on autopsy and many, many other cases have been posthumously confirmed on biopsy.

Since the advent of various Brain Banks around the world where people with MS are able to donate their brains for research even more work has been done in this field and there is no doubt that MS lesions have definite characteristic features that are unique to the disease.

So please, no more of this nonsense that MS doesn’t exist. Of course it does.

Belinda

80

Please highlight the post where I made this statement (in bold).