The nastiest part of this, is that the forum which Jencor and Dr Amir participate in, http://themsforum.org/index.php claims to be able to cure MS and all its main symptoms and…
RA and Fibromyalgia,
Irritable Bowel Syndrome
Crohns,
Coeliac disease,
Migraines, Headaches,
Eating Disorders
Depression,
OCD,
Bi-polar Disorder,
Sleep Apnoea
Schizophrenia,
Hearing Loss/ Tinnitus, and…
Infertility.
I’d go on, but this level of quackery is about as bad as it gets.
Some of the rhetoric about how disgusting the MSS is, how the NHS is funded by Big Pharma and its toxic drugs, which just exist to keep people ill, is shocking and sickening.
No one cares - only ‘real’ doctors like Dr Amir, who will cure almost anything with his orthodontic therapies. Now he cares…about your bank balance. Will there be enough to pay him? No pay? No treatment, no ‘cure’.
Yes, it’s anoned - he could be litigious. Anyone who makes that much money from sick people is almost certain to be on the phone to his lawyer.
Why are you so concerned what I chose to do with my money?
In the awful 15 years that Emma has had “MS” this treatment is the only one that has made a substantial and noticeable difference to her quality of life.
Why would you consider it so offensive that I chose to share that information publicly with other sufferers?
Call me cynical…but generally speaking people who turn to this type of baloney have been discharged from orthodox medical practitioners due to no finding of a diagnosable condition…ergo perhaps psychological in origin…ergo placebo effect???
Emma has an MS diagnosis, Relapse remitting. Complete with MRI’s the lot.
She also has a Neurologist who sits in front of her and says, “We don’t understand MS, we don’t know what causes it and there is no known cure - would you like to take these drugs they may help you with the symptoms”.
Those 2+ years of posts have the same style of writing, no spelling mistakes, punctuation pretty spot on and are all in support of this treatment - I personally find that quite an oddity given the range of such on most forums
I’m not concerned. What you choose to spend your money on is entirely up to you. Is Emma still well after her Venoplasty in Glasgow?
The problem is, that Dr Amir is a quack. He claims that all his patients with MS, don’t have MS at all. How does he know? Does he have their medical history? Does he carry out MRI scans? Is he a neurologist? Does he actually know which part of the brain does what? Or the spine?
What about oligoclonal bands? EB virus? How on earth is that linked to orthodentistry?
His ‘science’ is shockingly bad. I’m not a scientist and I can see that his ideas about neurology are wrong.
Emma only started TMJ treatment in Decemeber 2011, we had never heard of it before that point in time.
In Decmeber 2010 she had a CCSVI procedure, which is also very well documented on thisisMS.
Prior to that she was taking Copaxone.
If you are going to public try and debunck people at least take a moment to get things atraight before firing off a salvo.
I get it that you don’t like anything other than mainstream theory, the thing is, many other people might actually like to read the information I post and ofrm thier own conclusion. Who are you to speak for them?
I am not the OP, I chose to join this thread as I dissliked the agressive nature of some of the replies.
I’m not forcing anyone to see a TMJ specialist I’m simply publicly airing the journey of my long suffering wife and her battle with the misunderstood ailment currently labelled MS.
Who are you to say I am wrong?
Without a current definitive understanding of the condition how do you know I am wrong?
You can follow Emma’s experience of CCSVI treatment in the following thread, start to finish, I couldn’t possibly compact all that information into a single post:-
So you’re not a specialist or a doctor but you know this is wrong?
We discuss all treatment Emma undertakes with her GP before she embarks on any particular course treatment. We provide him with printed information and ask his opinion.
Emma is fortunate that she has a GP who is open minded and willing to read about alternative therapy and consider the benefit it offers. In fact without prompting he arrange £2000 of funding towards Emmas CCSVI procedure from a private fund set up for tis very thing, we were extremely greatful.
The GP has become very interested in Emma’s since the TMJ treatment started particularly the complete eradication of neuralgia and vast improvement in the level of fatigue.
It was this interest that lead me to document Emma’s course of treatment on a monthly basis.
People attempting to make money from others who are desparate/at a loss for their symptoms.
I hoped before diagnosis i would be told i had an infection or something that needed operating on, not to be told i had an incurable disease. Its wrong to put in anyones mind its this or its not that. This is the reason we have specialists who have practised if the field for many years.
Ok, so, yes I am very cynical about so called, usually unqualified practitioners who prey on vulnerable people’s desperation and make a very healthy profit from it and working in law, I see an awful lot of it, in many shapes and forms and all of it unethical. The aggressive posts that I see on this thread are only coming from one direction and in trying to defend what you perceive to be a panacea for all of us who do not have “genuine” ms, I’m afraid your tone and manner is not becoming and certainly not helping, what I can only assume, you believe to be your good intentions, regardless of what that motive may be. I for one, shall not be further replying to this thread because I believe to do so, is only encouraging each rebuttal from EJC and I believe adding fuel to his fire.
Emma has a specialist who has practiced this field for many years. Her Neurologist at the East Surrey Hospital.
He openly admits medcine does not understand what MS is, or what to do to treat it. He will happily advise Emma take a drug that may or may not help supress possible future relapses, but he openly admits to not knowing what the drug is or how it works.
Many other peoples experience with their Neuro may be a lot more possitive. Many MS patients I meet have simply given up with their Neuro as they feel they have nothing to offer.
This thread got off on the wrong foot. The OP, Jen is angry, I’ve never met here but I’ve had conversations via forums with her. She’s angry that 22 years of her life has been lost due to what she sees as a misdiagnosis. She want’s to share this with other potential MS patients. Sometimes the way Jen presents her point of view can be taken as spam or confrontation. But when you read between the lines what you find is a angry person that’s lost a lot of her prime life.
Like pretty much every other poster here, I’m not a doctor or specialist, I live with someone who I love dearly and want to see get better. Traditional Medicine has given up on Emma, I really mean that, her Neurologist is a collator if information and offers nothing in the way of support.
We have chosen to undertake our own research, we have discovered something that in Emma’s particular case has provided such a relief of MS symptoms that it has quite literally given her her life back. She is now physicially rehabilitating and looking foward to life rather than the enevitability of permanent (rather than ocassional) wheelchair confinement. Emma is still an EDSS 65. to 6.0 but improving noticeably.
Am I wrong in sharing this information on an MS forum?
What other readers chose to do with this information is up to them, but it would be simply wrong to remove it from the forum.
I believe the previous poster has hit on a truth here, the word incurable. What I am reading is an awful attempt in trying to turn people’s minds from the truth that you and the op cannot face. It is incurable, face it, take the medication that was created to help. If the OP doesn’t want to and your wife doesn’t want to then so be it. If you really believe in the alternatives, please leave us all alone to get on with the path we have chosen or may need to in the future. Sam
Firstly let me make one thing very clear to you, I am not the OP. The aggression in this thread is coming very clearly from more than one source,
I’d like a few of the posters on this thread, particularly the anonymous ones, to read the house rules and then reread thier posts and ask themsleves exactly who is the aggressor?
In what way has my tone been anything other than reasonable?
On your point of money and perceived fraudulent practictioners. Dr Amir is the only specialist I have ever come across that does not require and in fact refuses payment in full up front before treatment. It was one of the factors that swung our decision to go ahead, it’s something I’ve never come across before. One year on it was the best decision we ever made.
What do you find so difficult to swallow about my posts?