You’ve got it. In short how can rule out anything that shows promise until you have a cure?
When you find a cure you’ve more than likely found the cause.
Interesting article about Big Pharma.
This is disingeneous. You could apply the same argument to any neurological condition.
The reason we do not fully understand any neurological condition? We do not yet fully understand the brain.
You could as well argue that we do not understand astrophysics because we have not yet observed a black hole or dark matter. But we still managed to send men to the moon and satellites into space far beyond our Solar System.
If we waited for perfect understanding, mankind would achieve nothing.
I would want to wait for basic understanding however - no point in trying to send a rocket into space that can’t even get off the launch pad. Something along the lines of knowing the difference between a neuromuscular disorder and a neurological condition for example.
Not insulting, simply pointing out your misunderstanding of what we’re getting at here.
We didn’t go to see a dental specialist to solve MS.
We went to a dental specialist to solve a dental problem. The side of effect of solving that dental problem is removeal of symptoms histroically associated with MS.
Why would a dental specialist need to understand MS, in fact how could a dental specialist understand MS when the most qualified Nerologists in the world don’t understand MS?
Your friend is the person you yourself called friend - the person who started the thread encouraging people to get their spinal symmetry assessed before starting DMDs; going so far as to suggest that some(most?) of us did not actually have MS. The Limbo forum is the common name for the New Diagnosis and Before Diagnosis forum. Sorry, as a brand new user, you may not have been aware of that.
Perhaps you’d like me to quote some of the lines from that thread, to remind you?
Bingo!
It is not understood.
If we sit and wait for current research we could be no better off than we are now - so lets take a look down every avenue we can whilst we’re alive and capable of looking. Where is the negative in doing so?
HEAR HEAR!!!
EJC, one problem I have with this type of argument is that there is a big difference between having a treatment which helps with MS symptoms and then making a big logical leap that this means that MS specialists have it wrong and don’t know what they are doing. Any time I look after other elements of my health, my MS improves. Relaxation and meditation reduces my fatigue and tingling arms. This doesn’t mean MS is a mental health problem. Physio therapy has strengthened my hips and bottom meaning I went from being unable to walk from the couch to the loo, to being close to walking a 5k. This doesn’t mean MS is actually a muscular skeletal problem. I could go on, and on, because I dabble in complimentary therapies which almost without fail give me some relief from symptoms. But to say any of this disproves the masses of peer reviewed research and good will and dedication of countless medical professionals is just not cool.
You disregarded the later point in my post. Please address the point about requiring basic understanding - something that appears to be sadly lacking in some quarters.
However, you ask, “Where is the negative in doing so?”
How about vulnerable people being misled into spending money on worthless, ill-founded “treatments” that may even do more harm than good.
What is actually upsetting you here.
The content of my posts?
The fact that I post at all?
That I have the nerve to suggest that symptoms currently being attributed to MS may in fact be casued by something else?
I just don’t get the hostility, no wonder I’m getting private messages from members unwillling to post if this is what their faced with.
Hear hear!
Outstanding post.
There is a huge difference though between suggesting something is not understood or being simply wrong.
Neuro’s are very bright people, or at least you’d hope they are to get where they are. However, they currently don’t have an answer for the MS problem - that doens’t mean they are wrong, it means they don’t have an answer.
When people have alternative treatments that provide relief of symptoms lets have some research into why the relief occurs, it might actually then help the Neuro’s find their eureka moment - would that not make sense?
You’ve got it, I’m agreeing there is a fundamental lack of understanding about MS globally - from every aspect.
Now we’ve agreed that’s the case does it not warrant even limited research when a relief of symptoms is found form an unexpected treatment?
This would be the same neurologist whom you stated had 500,000 patients? Surrey, of course has a total population of 1.1 million (source Surrey County Council).
According to the MS Society, there are MS Specialists in Chertsey, Kingston, Epsom, Frimley, and Redhill - as well as the East Surrey Hospital.
The article cited - which seems to be for the promotion of Mr Amir - is indeed 9 years old, so it is therefore somewhat surprising that Mr Amir is still making his devices up as he goes along! (Source: EJC in another thread.)
The Journal itself “Positive Health Online” is interesting. I have nothing against on-line journals (the costs of hard-copy journals will soon price many of the lesser ones out of the market), but when I see that one may choose ones country from a list of 15 - but if one does, the list of therapists does not change, then I do raise an eyebrow. When I see that amongst the list of therapists is none other than:
Cranio-Dental Symmetry: themsforum Paradigm Shift
then I raise both eyebrows. The address is (would you believe?) in Putney, clicking on it takes you to a page for Mr Amir, and to see that not only is themsforum about body assymmetry (so not about MS then - or is it), but both themsforum.com and themsforum.org are listed on Mr Amir’s web page, but a post on themsforum.com by no other than themsforum.org acually has a heading which says:
To avoid a diagnosis of MS seek out a Symmetry evaluation
then it does look rather like the whole thing is just a promotional exercise for a dentist who is specifically claiming to treat a condition that we would know as MS (but is not actually claiming to treat MS - so that’s all right then).
One wonders what the Care Quality Commission would make of this.
Geoff
i understand both sides of this argument.
EJC is thrilled to see his wife’s symptoms getting some relief.
others are seeing it as challenging the status quo which they have absolute faith in.
yes there is the question of money paid for these treatments and i’m sure it is a lot.
however i had the expensive ccsvi procedure and had amazing results. unfortunately my ms has brought more, newer symptoms.
i’m still glad that i had it done because i would always have wondered “what if?”
as long as a reasonable, healthy debate does not degenrate into hostility and insults we continue to bandy our opinions around.
please let’s remember that these are opinions and we should respect each other’s opinions.
goodnight my fellow msers, take care and be mellow
carole x
EJC: I too receive private messages every day. I guess they are not from the same people who you claim to have heard from.
How this is relevant I really have no idea though.
I frequently advise people never to assume that a symptom is their MS - doing so is one of the leading causes of death of MSers. Again though, I have no idea how this is relevant.
Any issue I may have with certain posts will almost always have to do with accuracy of content and/or hidden agenda.
I particularly dislike messages being altered to try and suit the audience, rather than sticking to the truth. For example, someone might massage figures to change the way their posts are received, such as changing 60 to 45 to 4 (minutes away from someone’s office). But let’s look at a more important example. The following are quotes taken from the thisisms forum. Some are by EJC (as indicated), the rest are by his wife’s orthodontist.
EJC, you state here that the treatment is for TMJ and not MS? Then I find these statements rather confusing:
“you have no idea of the conversations I have when I talk to Emma’s family about the fact I’m taking Emma to a Dental Surgeon to help her MS” (posted by EJC)
“The diagnosis and treatment is very complex and Dr Amir has developed a certain protocol and he is in the process of making courses ready for doctors to sign up and get qualified to take on the treatment of ME/CFS/FM/IBS/MS and patients suffering from many more aches and pains and psychological issues.” (posted by EJC)
"I also treat patients with supposed ME/CFS and have done so successfully for many years. Many such patients are eventually diagnosed with MS.
“In an effort to explain the origins of his theories, Dr Amir has asked me to post an artcile written by one of his patients. I believe the patient in question was the first MS sufferer that approached Dr Amir for treatement.” (posted by EJC)
“MS is more likely to be a consequence of cranio dental and skeletal asymmetry and treatable especially in the early stages. I however give no warranties but experience with treating a number of patients in the recent past appears to confirm my conjecture.”
“In my opinion careful physical treatment will prevent further damage. I have seen too many cases like this over the last many years. Your case goes onto only confirm my observations in stark reality.”
“I wonder if the early symptoms were attended to in the correct way [by having Dr Amir’s treatment] perhaps the patients would not have gone on to develop MS.”
Person with MS: “I went to see Dr Amir yesterday and he said that he only treated patients who are off all immune modulating medications. I’m not sure that I really understand the basis for this request.”
Orthodontist’s reply: “I think it is important for patients to do one thing at a time. If a patient is having chiropractic treatment plus my treatment they will never know what is making them better or worse. Therefore to be fair on themselves they should restrict to single therapies at a time. In your case whatever medication you are taking.”
“I took an MRI for one patient after 3 years and the plaques were exactly the same as 3 years earlier and after she had been cured.” [No change in plaques in a three year period is not unusual in MS btw.]
“We have found a more definitive and a less dangerous method of treatment and many are choosing this method which appears to have a better and more permanent outcome than CCSVI procedures. (90% of the patients I treat have had only limited short lasting relief with CCSVI procedures at a number of locations around the world)”
“patients especially those who are newly diagnosed into this despicable nonsense should seek immediate dental and symmetry evaluation to avoid this supposedly “Incurable disease” [MS].”
“I have now attended to many “MS” patients.”
Incidentally, I wonder if you agree with this statement by your wife’s orthodontist?
“The evidence presented by the above paper about the “Charitable status Society” [the MSS] appears clearly to show that this is perhaps more of a racketeering front and it should be outed and banished for its grossly unscrupulous activities which is doing nothing more than sentencing many people to avoidable incapacity and death. Its’ charitable status ought to be immediately reviewed and withdrawn.
I sent them a magazine article where my patient Mary Maguire had presented her case history and how she recovered from her MS through dental treatment. Apparently many other people also sent this to the society. This was 12 years ago. I never heard from them. Now I know. It went straight into the trash can. There was absolutely no enquiry or interest from them.”
And finally,
“Only a handful of people read these threads. My advice needs to be disseminated widely amongst patients who are at the receiving end of it.”
And here we are, not long after a different patient of your wife’s orthodontist posted on the ND&BD forum suggesting we all go and get tested.
Do you come on here EJC with the sole purpose of just upsetting people? This forum gives support, kind words and experiences that may help others, I just don’t understand the relevance of your posts. Either you are not a very nice person or you have big problems, if it is the latter I am sorry and suggest you get some help!! Karen
The Neuro in Question is Dr J Kimber. Our GP states he is required to cover 500,000 patients as I understand he also covers other geographical areas. You may be able to check that from your position.
Geoff, Amir would be delighted to have a conversation with you about his ideas, feel free to contact him if you’d like to discuss them.
I come on here to post information about treatment that my wife recieves that is making her better.
I understood that was one of the remits of this forum.
Thanks very much Carole.
All I asked is for a balanced discussion without the continued personal attacks.
As we look back through this thread (and previvous ones I’ve started) and see any posts suggesting any alternative threatments by any other posters you’ll see they go by completely ignored by all the board members intent on discrediting anything I choose to post.
Feel free to discuss CCSVI as the poster above has mentioned. Is that a lunatic fringe also?
I come here for discussion. Not sustained closed minded abuse.
So we both get private messages of support. To me that indicates a balanced discussion does it not? Or at least a discussion in which people are interested in both opinions.
We see a Dental specialist for treatment of a dental condition that as a side effect is treating symptoms currently attributed to MS.
You label things whatever you want to label them.
What I’d like to know is why this is happening?
Where would we be in medicine if we chose not to ask these questions when something unexpected turns up, particualrly when it’s unexpected improvements.
I’m presenting the findings that I have with my wife that they are improving her life, I would have thought that an ideal topic for a MS Forum.
What I’d like to see is a better understanding of why these improvements occur. Do you think that would be a good thing?
If you would like to discuss Dr Amirs theroies and ideas or findings I have no doubt he’d be delighted to talk to you.
I am not responding on his behalf nor am I in a psotion to answer qeustions you pose about what he may or may not “think” as I’m not him. He will willing answer your questions directly though I have no doubt.