TMJ 'dysfunction' - Health implications

This is really great news Jenny, after only 4 months of treatment. Very encouraging and still a long way to go before your treatment is complete.
Michele

[quote="liv65"]
4 months into treatment I feel physically the strongest I have ever been, but most important I have the psychological certainty that:

i) Yes, there has been a 'real' problem all these years (I often left the doctor's surgery blaming myself for being a whimp when they had concluded that perhaps I was just feeling a bit run down or that it was just a long common cold and I should 'rest up' for a bit)

ii) And that it was just ONE problem, rather than hundreds of niggling symptoms which I'd thought may all develop into separate, more serious illnesses.

I think so many of us have symptoms which have been attributed to 'getting old' or 'allergies' ''psychosomatic' or whatever. It is shocking to find them disappear. While we all wait for the big improvements, like mobility, every small annoying symptom that disappears validates this treatment approach. I have always believed in a holistic view of health, it just makes sense to me.

The Misdiagnosis of Multiple Sclerosis
I have always appreciated the posts by "Wheelchair Kamikaze" on Thisisms. He has a website and a comprehensive explanation about the diagnosis/misdiagnosis of MS. He does not mention the TMJ but it is worth reading:

http://www.wheelchairkamikaze.com/2011/ ... s-and.html

I have recently written to NHS Choices with my concerns about their promotion of MS charities that are not the impartial disseminators of information they should be.

NHS Choices Team
On 26 Oct 2012, at 19:29, Jennifer Cornell wrote:

Dear Sir/Madam,

I write to ask the reasoning behind your recommendation of the MS Society as a place for MS patients to acquire information about the disease. They do not impart any information that is not linked with its biggest sponsors, the pharmaceutical industry. Non-drug therapies are not only ignored but actively censored from being viewed at all.

I hope you will find time to peruse the following document which highlights the massive failings of a society that is supposed to make the care and education of patients a priority.
http://tinyurl.com/8e4odth

The social networks that have been provided by the MS Society are not an impartial place to go for information about treatments for MS. The following post was removed from MS Society Facebook within an hour.


Jenny Cornell
posted to
MS Society UK
4th October 2012 16:21 (2 seconds ago) near London
I have started an unlikely but amazing treatment which has made many of my MS symptoms disappear completely! I have been seeing a dentist specialising in cranio-dental and skeletal symmetry since June. I was found to have asymmetries in my teeth, jaw, atlas and pelvis, so I have been wearing various dental appliances (braces) which are moving my teeth and jaw into the correct position. See the graphs for an indication of my progress so far, and click on the links for more information about this life-changing treatment.
http://www.atlantotec.com/en/fundamenta ... agus-nerve
http://www.atlantotec.com/en/disorders/ ... h-grinding


No explanation was given for the deletion of my post. Many others have been censored and deleted for talking about therapies for MS that are not drug-based. People with diseases like MS deserve to know the truth about all the options for treatment available to them so that they can make informed decisions.

I would therefore like to request that MS Society are not promoted further by you because they do not have the patients' best interests at heart.

Yours sincerely

Jenny Cornell

For record purposes, this is the NHS choices page as of today:

NHS Choices' Reply and my counter response

Dear Jenny,

Thanks for contacting us about your concerns over NHS Choices linking to the MS Society. The MS Society is widely regarded as being among the leading charities dealing with multiple sclerosis and fulfils our rigorous requirements for external sites that we link to - this includes the demand that
on health matters, sites use current and reliable clinical evidence that is verifiable from other sources.

We take great care over the websites we link to and review them regularly, but NHS Choices is not responsible for the content of those sites. The inclusion of links to any external website from NHS Choices should not be interpreted as an endorsement or promotion of that site, its content, or any product or service it may provide.

Despite your assertion that the MS Society is censoring information about non-drug treatments, its main website does carry a good deal of information on non-drug treatments and complementary therapies that may benefit those with MS, and your own post about cranio-dental and skeletal symmetry to the MS Society Facebook pages of October 4 is still there today (November 7).

If you have concerns about the MS Society's policies regarding what it publishes and the rules it applies on its social media pages, then you would have to take up those concerns with the MS Society.

NHS Choices at present has no reason to stop linking to the MS Society, which is regarded as a reliable source of information and advice for those living with this condition.
Thanks, once again, for raising this with us.

Kind Regards,
The NHS Choices Editorial Team


Thank you for your reply. However, I am extremely disappointed with the conclusion you make regarding MS Society.

In your reply you state that MS Society fulfils your rigorous requirements for external sites that you link to, including the demand that "on health matters, sites use current and reliable clinical evidence that is verifiable from other sources." The MS Society is currently promoting on its website unlicensed drugs such as Mitoxantrone, a cancer-fighting drug, which can be obtained on a 'named patient basis' as a treatment for MS - or the use of Botulinum toxin or Botox to treat urinary incontinence in MS, licensed without first having been through clinical trials to prove it's efficacy and safety. Is there any reliable clinical evidence to back up these recommendations?

If you had read the document that I attached with my email, you would see that it is in itself a letter to Simon Gillespie of MS Society outlining all my and others' concerns about the way it is run. Our questions regarding disclosure of the conflicts of interest held by the MS Society advisors have not been adequately answered.

You also state that MS Society disseminates information about alternative and complimentary therapies on its website, and deny their censorship of my post. I have looked at MS Society UK's Facebook wall and my post of 4th October is not there, despite your assertion that it is! Other MS patients have had their posts about CCSVI and their successful treatment deleted from the wall too.

The Influence of the Pharmaceutical Industry, House of Commons Health Committee
http://www.parliament.the-stationery- office.co.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf

“Competition in the industry is based far more on innovative marketing methods and public relations than on the effectiveness and safety of its products.”

Patient Organisations
Over 200 national patient organisations and support groups exist in the UK today. Such groups provide information and a range of services to their members and the public, and often campaign for increased access to particular treatments. A goal of many patient organisations is to influence healthcare policy for of patients; as the MS Society described, this aim often coincides with that of the pharmaceutical industry:

'The Society and the Industry share the common goal of increasing the resources available for the treatment and management of MS. There are circumstances in which the Society will wish to work with the Industry to influence the policy of government and the NHS, or the attitudes and practices of the professions'.

Paul Flynn MP described fears that pharmaceutical companies use patient organisations as “conduits to promote their products in a subtle form of marketing”. This leads to a situation in which, instead of representing the interests of patients, groups “become marketing tools for the pharmaceutical companies”.

Referral by the pharmaceutical industry to patient organisations as “ground troops” for lobbying the Government to increase access to new drugs is further evidence of this.

The drugs we are being asked to lobby NICE for on the MS Society's behalf are dangerous, immune system destroying, ineffective and (most importantly for you) extremely expensive, costing the struggling NHS 9 billion pounds a year!
In this video about Alemtuzumab Dr Coles states categorically that “MS is an autoimmune disease” and that our immune system attacks our myelin. This is untrue.

http://www.youtube.com/watch?v=h0hnz3Iqdy0

Is Dr Coles really not aware that, according to 2009 Charcot prizewinner, Professor Prineas, when our immune systems kick in it is to clear up myelin, which is already dead?
T cells in the adaptive immune system are NOT attacking our myelin. Macrophages in our innate immune system clean up myelin cells which have already been broken down by something else, damaging the oligodendroyctes which form the myelin sheath. There is no evidence that T cells in the adaptive immune system attack myelin. It is not logical to give MS patients immunotherapy drugs like cancer drugs which are designed to work in the adaptive immune system – eg monoclonal antibody drugs ending in 'omab', 'iximab', 'zumab' or 'umab'.

Many people turn to MS Society when they have been diagnosed and are encouraged to get on one of the treatments to cut disease relapses by a third. 30% is the expected placebo effect from any treatment, so the claim that they cut relapses by a third is nothing more than a placebo effect and the drugs have horrendous side effects and even cause death. The side effects and risks of taking these drugs are not fully explained.

Many patients have taken your advice and gone to the MS Society website for treatment options. The drugs that they were put on have helped make their condition much worse and further degraded their quality of life.

Since you appear to have no compassion for the sick other than to channel them to their doom through useless killer drugs, I am putting you and others involved in your office personally under formal legal notice that I and a large number of other patients who have been injured by these drugs are gathering momentum to start a class action suit against all parties concerned in this situation. We have lost our youth and our lives through inappropriate advice by you. This formal notice includes NHS Choices, as it appears to be abundantly clear that you are possibly colluding with the drug cartel to perhaps defraud the public of large sums of money each year.

Because of your advice, I and many hundreds of MS patients have been injured and continue to suffer.

Sincerely,
Jenny Cornell[/color]

Well that is telling them Jenny. You might add to your list of complaints against the MS Society that they have no idea how many people have MS in the UK. And that their plan to produce this number is unlikely to give a comprehensive picture in the next 20 years. We know that the figures (guesses) quoted are probably half the actual number. From our limited FOI enquiries of GPs we estimate that there are probably about 160,000 people in the UK with an MS diagnosis.

Thanks Michele, the number of people with an MS diagnosis is another important statistic incorrectly reported. To be honest I have given up trying to get the 'powers that be' to even listen, let alone reply with comments indicating interest or concern about the points I and many others have raised. I find all this 'banging your head against a brick wall' upsetting, exhausting and stressful. We have been trying for two years now, lost count of the number of letters and emails I've sent. I would rather concentrate my energies into my treatment and getting better.

I had a fixed appliance fitted yesterday to give my mouth 'a rest' from the adjustable brace and I have been given a list of tongue exercises to do to correct the functioning of the tongue and swallowing technique. I will post an update of how this is going in a week or so.

I understand your feelings. I feel the same myself at times... it is so disheartening. I'll keep going as long as I can but there is a limit to the energy I am prepared to give to trying to make people see sense.
Best wishes for your treatment, I look forward to hearing how you are getting on.
Michele

Out of the ashes of the nasty pieces of work on the MS Society forums, who have tried to run down this forum and this form of treatment, a voice of reason has arisen.
This is "Skel" on http://www.mssociety.org.uk/forum/every ... e-time-out:

"There are three big problems with interweb forums:

1. The half of the message that normally gets conveyed in face-to-face interaction is absent - body language, intonation, facial expression.
2. You're prone to any shill, charlatan or genius visionary that comes along with a story you want to believe in.
3. You are always open to attack from quasi-anonymous keyboard warriors psyched on their own self-importance and abilitiy to agitate - or get taken down in friendly fire by a mod who lives on a different wavelength.

There are three big problems for the constituency that believe to their very core in the scientific method:

A. You don't know what causes MS
B. You haven't found any methods for rolling it back
C. You haven't found a cure.

There are three things that anyone faced with these problems can do:

i. Take a break - a week or two - to regain perspective
ii. Be open to all new ideas, don't block them out or lock them up; but scrutinise, challenge and skepticise - and make your own decision.
iii. Make a pact with yourself never to "catch feelings" from those you interact with on an arms-length basis."

Out of the ashes of the nasty pieces of work on the MS Society forums, who have tried to run down this forum and this form of treatment, a voice of reason has arisen.
This is "Skel" on http://www.mssociety.org.uk/forum/every ... e-time-out:

"There are three big problems with interweb forums:

1. The half of the message that normally gets conveyed in face-to-face interaction is absent - body language, intonation, facial expression.
2. You're prone to any shill, charlatan or genius visionary that comes along with a story you want to believe in.
3. You are always open to attack from quasi-anonymous keyboard warriors psyched on their own self-importance and abilitiy to agitate - or get taken down in friendly fire by a mod who lives on a different wavelength.

There are three big problems for the constituency that believe to their very core in the scientific method:

A. You don't know what causes MS
B. You haven't found any methods for rolling it back
C. You haven't found a cure.

There are three things that anyone faced with these problems can do:

i. Take a break - a week or two - to regain perspective
ii. Be open to all new ideas, don't block them out or lock them up; but scrutinise, challenge and skepticise - and make your own decision.
iii. Make a pact with yourself never to "catch feelings" from those you interact with on an arms-length basis."