Alternative Therapies thread - 2

Symptoms and treatments
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Well, I came onto forum this evening to find the Alternative Therapies thread locked for no apparent reason.

I had a couple of private messages today from forum members supporting the information I’m posting and wishing to discuss it further, but finding themselves unable to post in open forum for fear of bullying and aggressiveness from other members. How terribly sad don’t you think?

So lets start with a fresh thread shall we.

Over the years as my wife has battled MS, she’s been through the decisions of many of the posters on this forum.

Each time any new symptom appeared, no matter how unrelated it may seem to MS it was automatically put down to MS. Back pain, neck pain, leg pain and not once did we stop and consider that it might be something else causing it.

You grow up taught to rely so completely on the specialists providing diagnosis, they are Doctors and Specialists so they must know exactly what’s wrong with us!

There was a single article I read that lead us down the path of treatment my wife is on now - this one:-

http://www.positivehealth.com/article/case-studies/case-study-dental-treatment-for-multiple-sclerosis

It was like a eureka moment, not because we figured we’d found a “cure” but because it simply made us think differently about the physical problems associated with my wife’s illness.

What if the specialists understood so little about MS that they were wrongly attributing symptoms as MS? It’s not a daft conclusion to arrive at when you actually completely understand how little is understood about the condition at all.

So we started treatment and it helps tremendously with certain debilitating symptoms.

But this is the important bit. Do we think it’s treating MS? I’m not so sure it is. I think it’s treating a TMJ disorder in my wife that presented symptoms the same as or interpreted as MS.

That leads to the following possible questions:-

Was my wife misdiagnosed with MS when what she actually had/has is a TMJ disorder?

Is there any relationship of TMJ disorders with MS or do they coincidentally generate similar symptoms?

What is MS if a TMJ can generate the same symptoms?

What I’m not suggesting is this is the answer for everyone, I’m not suggesting it’s some wonder cure for MS but the results my wife has had with this treatment are screaming to be studied. That’s what I’m after - people to study these connections.

Lets not assume (because it is an assumption) that MS is singly and autoimmune problem.

But we always have a chicken and egg situation with NICE, they want a study under scientific conditions that there is something to it, that would be great please can we arrange to fund the study? Well, say NICE, there’s no study providing evidence that would lead us to want to fund a study! Arrrrghhh!

I hope Lord Saatchi’s Medical Innovations Bill goes someway to helping the brick wall that non drug related treatments find themselves constantly coming up against.

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[Content removed - accusation]

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Just read the article. Makes me question why all avenues aren’t exhausted before diagnosing ms. I have heard so many different ideas that cause ms symtoms. Ranging from a leaky gut (where small bits of food get in the blood) to a lack of vitamin d . Just goes to show how many avenues are left un-checked. My personal feeling is we dont have good enough understanding what can ‘cure’ theese things. But i have change my diet, stopped smoking and drinking, iam taking beteferons all of witch has not stopped relapses. I will ask my nuero about what other avenues we can look down, if no luck will ask ms nurse. Thanks for the info never heard of this before.

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I can only speak from our own experiences, many professionals will have different perspectives on various treatments.

My Wife’s Neuro consdiers anything not Drug based as “Snake oil” and he actually uses that phrase, but her MS Nurse says “If it works for you - then that’s just great”.

Always be prepared for varied and wildly differing responses when asking about treatments of this nature.

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I’m not going to bite right now because it’s late and I’m tired, but I will point out one statement by EJC’s mentor that, possibly more than anything else, should ring serious warning bells for anyone who knows anything about MS.

It is this: “While I can understand the patient’s sentiments, I would be most reluctant to raise hopes for millions of sufferers of this serious condition [MS]. I can confidently say that persons suffering from the extreme form, which is Amyotrophic Lateral Sclerosis, cannot be successfully treated with my methods.”

It is clear from this that the orthodontist that EJC promotes extensively on-line believes ALS to be a form of MS.

If anyone is still wondering what I’m talking about, ALS is a form of motor neuron disease. It has nothing to do with MS.

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As I said, I can only speak from our own experiences. It would be somewhat odd if I posted information about someone we’d never met or had treatment from.

As I’m not training in TMJ dentistry or any other form of dental specialisation that doesn’t make me a mentee, or the Dr in question a mentor. I just want to see my wife get well, we’ve found something that helps her and I wish to share it with others in the hope that it may help some of them.

We see this particular chap, you’ll see at the top of the article that it was published in 2003.

In the 9 years since this was published a lot of people have been through his surgery, including my wife who is still under his treatment.

What would be wonderful is a study of the theories. Getting that study organised is the most difficult part of all of this.

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Doesn’t it worry you EJC that the man in question doesn’t have any accurate knowledge about the complaint he is supposed to be treating? Teresa

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He has a very extensive knowledge of TMJ treatment, which is what my wife is being treated for.

You’ve made the assumption that we’re visitng a dentist to seek treatment for MS, which we’re not. We’re visiting a TMJ specialist for treatment of a TMJ disorder, which happens to be removing symptoms that have been attributed to MS.

So from where I sit, he seems to know a great deal about the issue that he’s treating.

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After having posted I thought again about your question (which is a very reasonable one) and our last meeting with Emma’s Neurologist.

During that meeting Emma’s Neurologist openly admitted that they don’t know what causes MS or even any detailled understanding of it.

Assuming you see a Neurologist, does it not worry you that the specialist treating you doesn’t know about the complaint for which you’re being treated?

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The one line from the article linked by EJC that really struck my eye is

“I phoned and spoke to the practitioner and described my symptoms. He said that he had read a lot about MS but he had never seen an MS patient and was keen to see if his hypothesis would work for this condition.”

Well, that inspires confidence!!!. I’d feel so safe (sarcasm) seeing someone who doesn’t know the difference betwen Motor neuron Disease (as pointed out by Rizzo) and who by his own claims treated patients without having ever seen one with the condition to test his hypothesis!

Brings to mind that old saying “A fool and his money…” but hey, each to their own I guess but Sheeesh!!!

Belinda

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I agree; I think it would be very difficult to get any funding to study Dr Amir’s hypothesis that MS does not actually cause neural damage because demyelination is a myth and lesions are really calcification.

I suppose you could try smaller funding bodies like the MSS? Although I suppose they may not take kindly to someone who has publicly called them a “racketeering front”.

In which case, how disappointing that 9 years of study of “a lot of people” has not provided sufficient data to publish in a reputable journal and thus encourage other orthodontists to take up the cause.

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My neurologist knows all about MS. Why do you assume that all are the same?

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He was upfront with the patient who accepted that and agreed to proceed. In her case it was the best thing that she ever chose to do.

As I said, this was 9 years ago and is posted historically, a great deal more has been understood in the 9 years since this first occired.

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So he knows what casues it and how to treat it?

That’s what I’m getting at, Emma’s Neuro is the MS specialist for the entire Surrey county. He admits no one know what MS is - medicine doesn’t understand it.

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My points come straight from recent, direct on-line quotes from yourself and your wife’s orthodontist. In fact, I first heard about the calcification “theory” in the thread your friend started on the Limbo forum this month; apparently for the sole purpose of promoting the services that the orthodontist offers.

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I am pretty sure that my MS specialist knows more about MS than your orthodontist does! Teresa

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I have no doubt he thinks he does.

I’ll repeat it again for the hard of understanding. We’re seeing a dental specialist for dental treatment that happens to be removing symptoms that have been historically associated with MS.

Do you not think the link between those two things is worth a look see?

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Actually my real concern about all of this is that until we actually know what MS is then everyone is stabbing in the dark. So called experts or lay people.

If we do not know what MS is then we cannot possibly say it has nothing to do with ALS . All we can say is with current knowledge there is no known connection. LDN seems to work for both so that maybe one connection.

Over the years there have been many theories - Auto Immune, triggered off by a virus, mercury poison, calcified pineal gland, lack of vitamin D and more recently CCSVI. Actually I very much doubt it is a single disease or from a single cause.

We pretend that the only way to solve the problem is the current research methods so called ‘Evidence Based Medicine’; well we will not know that until a cure is found. So far 150 years and counting.

That’s why people tend towards trying alternate solutions to what fits into ‘Evidence Based Medicine’. The other reason of is the cost of licenced drugs now means they are only available to a few anyway.

Here is an interesting development in that field.

http://multiple-sclerosis-research.blogspot.co.uk/2012/11/the-bigpharma-alternative.html

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No idea what you’re getting at here, who is my freind and what is the Limbo forum?

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Are you showing your true colours by insulting me? Totally unnecessary! Teresa