Treek has made the point nicely here. Also EHC, It’s not the case that no posts removed - the moderators did remove various posts that moved into personal attack territory.
We closed the thread in the end because not only were people getting upset, but the argument was going round in circles. Yes, the thread remains, but we followed it closely because at times, it bordered on promotion and not just personal testimony. If something is anecdotal or personal, it’s worth making it clear.
If you’re a new user and people sense that you’ve come here simply to provoke people, it won’t go down well - please bear that in mind.
Oh, and as for another forum for alternative treatments, we’ve been asked to set up different forums for many, many subjects over the years - and we won’t be setting up a forum for alternative treatments now. There’s plenty of space for discussion on all manner of topics here.
And if we did set up a separate forum, who’s to say there wouldn’t be heated debates in that forum too?
I do actually like to hear about natural therapies and I expect just like conventional drugs they help for some and not for others. My advice though to you EJC is that you should not slag off therapies or drugs that others find beneficial. Especially dont slag off scientifically proved theories. I made a statement last week in the flujab post refering to the herd population with regard to immunity. It really did upset someone so I did apologise even though I didnt actually believe I had done anything wrong as the comment was completely misinterpreted. Anyway we thankfully made our peace with no hard feelings.
I have issues with my cervical spine, one lesion/cervical atrophy (???) one neuro thinks possible MS another thinks it was from radiation treatment I received 22 years ago. Anyway a few weeks ago I found an article on ‘bevacizumab therapy for radiation necrosis of the CNS’ and sent it to the neuro that thought I had radiation myleopathy. He had never heard of it but he had looked into it and thinks that it would be worth giving it a go. It is a drug that is used widely on the NHS but not for what I have so I have to fund the treatment myself at a cost of £5000. In essence I am jumping in with 2 feet into a treatment that certainly is not fully trialled for what I have. Problem is what I have is as rare as hen’s teeth so no drug company is going to waste any time/money on it.
I did enjoy the debate on the TMJ as I enjoy reading all the technical stuff. I have further researched TMJ and was interested to read that kids who have teeth out for braces can develop migraines. My daughter developed sever migraines during orthadontic threatment. They continued after the braces were off and she was given medication for them. She came off the medication after 5 years and so far has been 2 months clear with no migraines. She had to stop wearing the retainer at night because they gave her a headache.
With regard to alternative therapies they are becoming more and more widely accepted within the medical profession. I really think that they contribute to a positive mind. My yoga teacher always says ‘Strong Mind gives strong body and vice verser’.
I gave the HBOT a go as it is supposed to be good for radiation mylopathy and I was lucky that the MS centre that ran it was only a 10 minute drive away. I went weekly for about 18 months and met many MS people who swore by it. I felt it helped me with fatigue but what I really noticed was my skin. After 6 months of going I noticed that the age spots on my hands had vanished. They had been there for years. My freckles on face have pretty much disappeared, much to my husbands annoyance as he like them! But unfortunately the spasticity in my right leg did not improve. Anyway they were badly hit with floods in July and have had to close temporarily and you know what - the age spots have returned. It was expensive for me as I had to pay double what people with MS had to pay.
Anyway I have 2 neuros (both MS specialists) from the same town different hospitals who have an entirely different view on me. One thing that they are certain about is that MS is a pretty mysterious disease with the likelyhood of different causes.
What a great post Moyna. You’re explaining first hand the thinking behind looking beyond what is currently accepted as available treatment for MS.
I hear you and I agree.
What does bother me though is treatment that is unproven that becomes accepted as proven through repetition and suggestion, but in fact only remains a theory with supporting studies, suggesting the theory works to a degree, with a product that isn’t fully understood for a condition that medicine hasn’t managed to define.
I understand millions of pounds are sunk into studies about the efficacy of many treatments, usually drug related. Now I’m not a consipiracy nut, I don’t believe medicine is purposely oppressing alternative ideas and therapies but I do believe capitalism (market forces) is.
What do I mean by that? Well, basic market forces actually. Drug companies exist to make money and provide products to help people. In what order these two tasks are prioritised is open to debate - but not in this thread.
This creates not so much a conflict of interest, but a compulsion to pursue treatments that have a profitable outcome. In so much as a drug is made to treat a condition, it does treat the conditon, it is available for £xxxx to so many thousands of patients a year. End result - happy patients, happy drug company, happy shareholders. Everybody happy. However, as you’ve highlighted below, not enough potential patients = not enough potential profit = no research. No conspiracy there, that’s basic market forces (money) talking.
But what if the treatment is not drug related. The whole issue of funding the trials required for the theoretical treatment hits a brick wall. There won’t be any Big Pharma money as what would they have to gain? A treatment with no drugs, no thanks, we’ll leave that to the philanthropists to deal with.
That’s tough, it’s not as if it’s something completely alternative, it’s just “off label” use. £5000 is a big determining factor in “giving something a go” aside from the health benefits. I don’t envy your choice here, but if it were me I’d be reading everything I possibly could about it. Good and bad.
Only yesterday I worte a letter to Lord Saatchi in support of his Medical Innovation Bill expalining the treatments my wife had tried over the last three years and the reception they get from the established medical community. The fundamental ethos beind the bill is encouraging medical specialists to refer patients to alternative drugs and therapies that they believe will help them without the risk of getting sued and to encourage innovation safely. Ok that’s very simplistic, a more full explanation is here:-
My wife had CCSVI treatment 2 years ago now. It was moderately successful and she still retains the eyesight improvements it afforded her. At the time we spoke with many patients in Scotland who were having HBOT therapy - we’d never heard of it. But it seemed a completely logical thing to do, flooding the vascular system with pure oxygen. We also found like you that the single biggest improvement was noticeable and extended periods of reduced fatigue. Sadly for us, the sheer time and travel invovled negated the benefits.
Your experiences with two Neuros highlights the problem. How on earth do we treat something that medicine doesn’t really understand?
I’m not entirely sure there ever will be a “Eureka” day when someone sudenly declares a cure for MS.
I think of MS like a onion, each layer of onion is a potentially different problem. A combination of any number of these problems provide a certain set of symptoms which make up your personal MS onion. It’s up to you to work out what each layer is and how to adress it.
In my wife’s case we’ve found that correcting misalignment of her jaw has almost eradicated crippling neuralgia and reduced her fatigue levels from a point where she had 6 hours of useable energy a day to a now more normal 13 to 15 hours a day.
Does she still have MS symptoms? Of course she does, you’re not going to eradicated 15 years of living with MS overnight, or even in 12 months. However, they are reducing.
Today she started private sports massage sessions twice a week to rehabilitate her wasted muscles. She sees a Neuro Physio on the NHS, once every 6 weeks who advised here she needed treatment twice a week - then booked an appointment in another 6 weeks time…Oh dear - time to put your hand in your pocket again, fortunately this time her father agreed to cover this for her.
I’m interested to see how this progresses in a weeks and months to come.
Good luck with your drug treatment decision Moyna, £5000 is a big ask for “it’s worth a shot”.
Some of you may or may not find the following articles of interest. A little over a year ago this was one of the articles that swung my wife and I’s decision to go and ask about Jaw Misalignment treatment.
We read it, spoke to other patients and figured “well, what have we got to lose, worst case scenario you get some nice straight teeth!”. There’s no drugs involved, no surgical intervention and Emma has a Neurologist that is only interested in pushing a product to Emma that she’s made clear she is no longer interested in.
Link to original article here (bear in mind this was written 9 years ago and is written by the patient herself):-
Text follows for those not wanting to follow the link off forum:-
The backdrop to this story is long and convoluted, so I will spare you the details and concentrate on the essentials.
I had been diagnosed with multiple sclerosis in 1984, following a lumbar puncture and, more recently, by an MRI scan. Nothing remarkable or untoward happened until one night in December 1994, when I found myself in the most dreadful situation. Having fallen asleep after a day at work, I awoke suddenly and dramatically on hearing a loud click in my head behind my right ear. I got up feeling ‘spaced out’ and terrified, as if a curtain had dropped between reality and myself, as if I existed in a bubble.
The following day I visited my GP who recommended rest and suggested that ‘stress’ was the probable cause. A few weeks off work brought no improvement. I felt even worse. A metal band seemed to be tightening its grip around my brain, causing extreme pressure and my mind to run riot.
Convinced that I was going mad/ crazy, I agreed to see a psychiatrist who decided that I was mentally ill and suffering from anxiety/depression. Anxious yes, very worried yes. Who wouldn’t be? The prescribed cocktail of drugs brought horrendous results. I was then required to attend a day centre from which I was discharged after a period of three months with the comforting comment that I might never recover – a fate worse than death.
Neurology was the next area to be explored. There was nothing to offer here and the consultant dismissively suggested that the earlier diagnosis of MS and/or mental illness was probably correct – “these were simply labels”!
Left to my own devices and painfully aware that conventional medicine had failed, I spent the next three years and thousands of pounds attending alternative medical practitioners, healers and anyone else who offered a ray of hope. I was clutching at very costly straws. By now I was feeling disillusioned and quite angry.
Still hoping for a miracle, I continued to buy health magazines. My luck was about to change when an advertisement caught my eye. Terms such as ‘cranial symmetry’ struck a cord with me. 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. He would be in a position to say if his criteria would be helpful after he had examined me.
In short, I took the plunge and flew from Belfast to London. In spite of niggling doubts, I was hopeful. I desperately wanted this to work. My fears that this was another wild goose chase were overwhelming. Nothing could have been further from the truth.
I met the dentist who patiently listened to exhaustive responses to his questions before examining my mouth and jaw. All doubts disappeared when he casually observed that mine had been a problem waiting to happen and had begun when I cut my second teeth. He didn’t know that at around the age of eight or nine I had started to suffer from migraine and had been troubled with it ever since. He further stated that the history of my symptoms fitted in with his hypothesis and was in line with his predictions and thoughts on the subject. He also warned that, as he had not previously treated an MS patient, he could not give any kind of warranty.
I received a full explanation about the underlying cause (according to his hypothesis), and the proposed treatment. Concerning my perfectly straight teeth and jaws, he said that they were not in harmony with the rest of my head. I was fitted with a dental appliance and was asked to follow certain exercises that he prescribed. I continued wearing various appliances for two years and got increasingly better as time went on.
Now, some four years later, I have experienced a huge improvement and, in fact, normality. Almost all of the problems that troubled me prior to and after the diagnosis of multiple sclerosis, have disappeared. Although the treatment finished some 18 months ago, I still visit for check ups. It seems that my face says it all. Not the expression but the ‘arrangement of features’. He doesn’t need to ask how I am – he seems to know. He views things through a wide-angled lens (metaphorically speaking) looking for the bigger picture. Minor ups and downs that I have occasionally suffered are quickly sorted out.
It strikes me that there is something fundamentally wrong regarding the way in which medicine is controlled and practised, as far as chronic illness is concerned. My experience raises very serious questions, which warrant serious consideration. Psychology and psychiatry are nebulous areas, and too often when conventional medicine cannot find the answers, patients are being referred into the unknown. They are weaned out of the system if they fail to take up the psychiatric route – which is, at best, only an attempt to paper over the cracks.
My heartfelt thanks to Mr Amir for succeeding where others have failed, for thinking laterally, for his power of prediction, for leaping forward for and, in his profession, for being brave and forthright in his judgements, for his ability and confidence, for not giving up, for his passion in the care of his patients and making the dreams of many come true. I was fortunate enough to meet him.
While I can understand the patient’s sentiments, I would be most reluctant to raise hopes for millions of sufferers of this serious condition. I can confidently say that persons suffering from the extreme form, which is Amyotrophic Lateral Sclerosis, cannot be successfully treated with my methods. With milder cases, especially for those where the condition has not been long standing, this may be a breakthrough. However, even to make this claim I need to have successfully treated many more patients. The lasting effect of the treatment will not be known for many years to come. It does appear already that ongoing supervision will be necessary but refinement of technique together with patient motivation may obviate it in some cases.
Constraints laid down by the scientific community require that the treatment methodology must be reproducible at other centres before any real claims of a cure, or rather relief of symptoms, can be made. The methods also have to withstand the rigours of a peer review and recognition by the governing body of my profession for the necessary protection of patients.
Perhaps we are on the threshold of a definitive new discipline. This requires funding for the establishment of a centre for excellence where researchers and practitioners from multiple disciplines can combine the hardware, software and training facilities together for the advancement and implementation of this discipline.
When I first heard about TMJ treatment one of the first articles I came across was the following written by an MS sufferer explaining her journey with the conditon and treatment.
The little post above probably looks slightly odd now - I’d made several posts over the weekend all of which were “passed to the moderators for approval” none of which have been posted. So much for censor free forum eh?
This thread was one I discovered I couldn’t reply to.
Anyhow that seems to be fixed. So lets tray again.
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:-
It was like a eureka moment, not becasue we figured we’d found a “cure” but becasue 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 assumtion) 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 realated treatments find themselves constantly coming up against.
Hi to get my leg working again it would be worth it. After all you could barely buy a second hand car for under £5,000 these days. Thankfully we have some savings. The treatment has had some good feedback for RM in the States. But I am relying on this neuro being right. If the other neuro is right in that I have MS then it will be a waste of money. Who knows if it works well for me and I did have MS then it could be a new treatment for MS - who knows!
Moyna x
PPS I was looking through older posts and saw that George (ggood) spoke highly about snake venom at a cost of £50 per anum. Does anyone know were you can get this?