I love Hendrick’s too - but I’ve recently discovered Tann’s, which is cheaper, but oh, so good.
xx
EJC must be loving all this attention,he knows exactly what to say,to make you all ‘bite’ why dont you all just ignore him,best way,when hes not getting a reaction he will soon find someone else to amuse him.
It’s funny, I’d forgotten about this thread. I was only reminded about it as someone sent me a PM this morning which prompted me to look at it, they just couldn’t understand why everyone had got upset.
The comfort blanket comment wasn’t meant to be in the slightest bit derisory or confrontational, it was a comment made by my wife who after spending 13 years under a Neuro that eventually told her that modern medicine had nothing to help her any further, decided that she’d seek another route.
We discussed coming off the drug she was taking, she’d described the thought of doing so as feeling like stabilisers were being removed from her bike or that a comfort blanket was being taken away. Her words not mine. I guess it’s been taken the wrong way. I didn’t for one moment consider it would be taken as offensive.
I’m not surprised though to be honest, I get the feeling if I posted anything on here, even a glowing report of how wonderful the latest DMD’s were proving to be, it wouldn’t be the content of the post that mattered it would just be my very presence on the forum that infuriated people.
The same faces would arrive to pick holes in every syllable typed. The moderators would be again inundated with requests for locked threads and deleted posts.
We even have a qualified Doctor joining in with banter, thinking he knows why I’m here and what my thought process is - go figure?
It’s been made clear to me by the moderators of the forum that I should go elsewhere and post information about alternative therapies and treatments as there’s no place for such discussions on the MS Societies boards. Interesting.
It’s a shame, like other posters who have commented over the last few weeks, I like my mind broadened not narrowed.
So we find ourselves here again, another thread not started by me, on which I typed what I though to be an innocent (and constructive) comment, degrading into a spiral of verbal due to personal prejudice and or misunderstanding. I wasn’t shouting any agenda, I wasn’t trying to create any confrontation I just answered the OP with what were my wife’s thoughts after she went through the same thinking process he had.
Some of you might want to take at yourselves.
Bring on the padlock.
Looks like HKFooey was right on the money…
And BTW EJC, how come your dentist mate Dr Amir is quoting people from here on This Is MS if you and he aren’t collaborating in your efforts here?
Amir
Post subject: Re: AtlasBalance (jaw misalignment) Dr M Amir - Putney Londo
Posted: Mon Dec 17, 2012 1:19 pm
An interesting post on the MS Society forum went like this:
"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."
And in a later post he said:
“I believe the scientific method will ‘one day’ make a breakthrough.
Until then, I (for one) will be open for listening to maverick outsiders, garden shed boffins and spurious snake oil salesmen.
I mean, why wouldn’t you?
Being open to stunning developments is one of life’s great joys.”
B
[quote=EJC]
It’s funny, I’d forgotten about this thread. I was only reminded about it as someone sent me a PM this morning which prompted me to look at it, they just couldn’t understand why everyone had got upset.
[The comfort blanket comment wasn’t meant to be in the slightest bit derisory or confrontational, it was a comment made by my wife who after spending 13 years under a Neuro that eventually told her that modern medicine had nothing to help her any further, decided that she’d seek another route.]
We discussed coming off the drug she was taking, she’d described the thought of doing so as feeling like stabilisers were being removed from her bike or that a comfort blanket was being taken away. Her words not mine. I guess it’s been taken the wrong way. I didn’t for one moment consider it would be taken as offensive.
I’m not surprised though to be honest, I get the feeling if I posted anything on here, even a glowing report of how wonderful the latest DMD’s were proving to be, it wouldn’t be the content of the post that mattered it would just be my very presence on the forum that infuriated people.
The same faces would arrive to pick holes in every syllable typed. The moderators would be again inundated with requests for locked threads and deleted posts.
We even have a qualified Doctor joining in with banter, thinking he knows why I’m here and what my thought process is - go figure?
It’s been made clear to me by the moderators of the forum that I should go elsewhere and post information about alternative therapies and treatments as there’s no place for such discussions on the MS Societies boards. Interesting.
It’s a shame, like other posters who have commented over the last few weeks, I like my mind broadened not narrowed.
So we find ourselves here again, another thread not started by me, on which I typed what I though to be an innocent (and constructive) comment, degrading into a spiral of verbal due to personal prejudice and or misunderstanding. I wasn’t shouting any agenda, I wasn’t trying to create any confrontation I just answered the OP with what were my wife’s thoughts after she went through the same thinking process he had.
Some of you might want to take at yourselves.
Modern medicine could not offer your wife anything more because she is SPMS. Dmd’s do not work for SPMS. There are ongoing trialls for SPMS but unfortunately at the moment there is nothing available. Dmds do not work for everyone and unfortunately your wife is one of those people. That does not mean they don’t work for others.
I suspected Emma was SPMS when i asked to speak to her and you said her sight was so bad that she could not see the screen. I am very sorry about this.
I can see you and your wife may want to seek an alternative route as there is nothing available to her at the moment but don’t forget the newly diagnosed do not need to do this and seeking ‘an alternative route’ could have devastating results for them.
I can understand that you will try absolutely anything that might help your wife in your desperation but i do feel that there are new drugs round the corner for SPMS and PPMS. I hope this is soon.
Teresa.
Wrong, wrong. I started LDN thanks to the advice on this board. Changed my diet and in doing so stopped a 9 month long relapse - again thanks to people on here.
The mods and webteam don’t object to discussion of alternatives - many people here use the MS Therapy Centres.
The mistake you made was posting out-of-date dmd reports, which have already been discussed for the last couple of years. The DMDs aren’t important to you. They are very important to many people here. It inflames the posters. Where do you think people on drug therapies are going to hang out and talk to each other?
Lots of us try all sorts of things to try to stay as well as we can. There are many people here with broad minds. You aren’t one of them. You came here with an agenda - to promote Dr Amir.
Oh and the other mistake was writing that I wished your wife ill. INEXCUSABLE and then mocking my MS symptoms. UNFORGIVEABLE. I was trying to be sympathetic.
I’ll be very glad to never see your initials again. Now go away.
EJC this forum is not here to ‘broaden’ your mind, it is here to support sufferers of MS. Teresa xx
Nice to see you’re looking elsewhere to broaden your mind.
[quote=“Treek”]
My wife has RRMS, at least that’s what her Neurologist still considers her current position.
How did you arrive at SPMS or PPMS?
ROFL
Nope, you got that soooooo wrong. I went to TIMS to find out what your true colours are and I see you sing a very different song over there. All about how Emma doesn’t have MS, that she was misdiagnosed, that MS doesn’t even exist, that DMDs are evil, dangerous and part of a money making racket of Big Pharma etc etc… Not quite how you present yourself here, is it?
And OMG what a load of ill informed hog wash the majority of people write on that Board. It reads like a hate board for Big Pharma and a conspiracy theorists delight.
Broadening the mind involves being educated, not believing any half baked theories that you come across. I am broad minded but not gullible. Which is why I am a member of these Boards and not of TIMS.
Now since the Moderators asked you to “go elsewhere” why don’t you take their excellent advice and head back to TIMS where you fit in so beautifully?
B
Rely on TIMS to broaden one’s mind? LMAO!!! Well, it certainly contains stuff that I would never even dream of, but personally I prefer the distinctly more reliable multiple sclerosis research blogspot, as well as reading academic journals of course. A lot of us do on here.
BTW, I notice that you say you didn’t mean anything by your comfort blanket comment, but I didn’t see the word “sorry” in there anywhere.
I also notice that you haven’t actually explained how and why Dr Amir is quoting selected extracts from this forum. Can you?
When a neuro says there is nothing more modern medicine can do for you - that means unfortunately the ms has progressed to SPMS as there are several RRMS drugs a neuro would suggest in trying before being taken off them completely. A neuro would not take someone off copaxone unless of course she was allergic to it or it was not working as the ms had progressed. Unless of course it was your wife’s decision.
The other reason was that in my experience - i have lost my sight twice now in one eye each time because of Optical neuritis. I was told that as i was RRMS then my sight would improve and it would take time but i would find new nerve pathways. I thought SPMS because your wife has not regained her sight. I could be wrong about this though as its just my personal experience.
Someone more informed about this i am sure will come along to explain it.
Teresa
Oh dear EJC!
You seem to have been tied up in knots by Brog64 and Rizzo!
Thanks for the link B. That is so informative.
Teresa.x
Is it not strange how this thread has taken the same turn as so many others.
What “EJC” wants to post is always presented as moderate, - It’s not me, it’s the moderators, other posters, etc -yet always manages to hijack a serious thread. One of the problems “EJC” has to contend with is that if you look at all the bits, across several posts and several fora, the bits do not fit together!
This stared here with two posts by “Jencor69” (about Dr Amin) which was then taken over by “EJC” answering for his wife.
So, is “EJC” the husband of “Jencor69”?
“EJC” says his wife (“Emma”) cannot see the screen to use a computer - so does this mean that all the posts on all the various threads and fora made by “Jencor” were actually made by “EJC”?
“EJC” lives just 4 minutes from Dr Amin. So, why does his wife go all the way to The East Surrey Hospital to see a Neurologist? There are several very good hospitals in what could be described as a ring around the Upper Richmond Rd part of the South Circular Rd.
On another thread, “Jencor69” only started having treatment from “Dr Amir” in July, and by September was posting how wonderful were the effects of this new treatment. At the beginning of October, “EJC” was asking “Dr Amir” if he could post graphical results of “Emma’s” treatment. Wow, that is fast; just three months and there are enough results to plot on a graph.
Now, according to “EJC”, “Emma” has tried CCSVI treatment, and LDN. and was on Copaxone before that. If one moves to SPMS then the Copaxone stops. If it is still RRMS but the very agressive variety, the medication is changed. “EJC” quotes his wife’s Neuro as saying that there is nothing that can be done for her, and separately names his wife’s Neuro. Oh, and this Neuro looks after the whole of Surrey and has 500,000 clients; and that number, and the number of Neuros listed at other hospitals in Surrey, would suggest otherwise.
The expression “smoke and mirrors” comes to mind - as in “keep talking and waving your hands about, and no-one will check the details”. Perhaps this thread might just show that several people here actually have functional memories, and will cross-check, and will point out the discrepancies.
Geoff
I believe the correct term is “testiculating” and means wildly waving your arms about, while talking complete Jackson Pollocks.
whammell - I gladly stand corrected.
Geoff
LMAO Love it
B x