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acupuncture therapy for myasthenia gravis ?

destin
43 posts
Jun 30, 2009
1:24 AM 		Hello,
i just wondering if anyone has sought acupuncture therapy for myasthenia gravis symptoms.
And as everyones knows that MG and stress and panic syndrom are going together,may be these therpy could help us: first to be more calmy, second not to be too nervous and could help , not cure ofcourse of MG, but any improvment will be better also.
Thank you
:)
rachel73
110 posts
Jun 30, 2009
5:13 AM 		Hi
I had accupuncture when they believed my ptosis was caused by bells palsy.

It didn't resolve the ptosis, however I did find it very relaxing at what was a very stressful time -- Drs were suggesting I had had a stroke or MS etc.

I found it reduced my levels of anxiety.

I got it on the nhs as my local physio dept has a guy physio whos also trained in it. When we weren't getting an improvement on the ptsosis front we knew it wasn't bells palsy as apparently it has quite a high success rate for that.

It was an amazing experience for me as I could feel the energy moving around my body. Maybe Im more suggestable than most!

Its something I would say explore.....nothing ventured nothing gained.

Rach
alice
388 posts
Jun 30, 2009
5:31 AM 		Dear Destin,

you write: "And as everyones knows that MG and stress and panic syndrom are going together"

where did you get this information from?

Do you know of a well conducted study that showed such a correlation? and what is "panic syndrome" and how is it diagnosed?

is it "panic sydrome" for a patient with cancer to be scared that he/she may die?

why is it "panic syndrome" for a patient that has debilitating symptoms, that come and go, not understanding what is happening to him or her, and being sent from one physician to the other, or being given conflicting information not to be somewhat scared and nervous?

my "panic disorder" turned out to be a severe allergic reaction to IVIG, one time. and potentilally life threatening respiratory muscle weakness (confirmed by almost any test that you can think of), another time.

I have never in my professional life, made the diagnosis of "panic disorder" in a patient with a medical condition that did not accpet it with a stoic calm at all times, and it beats me why so many MG patients are told so by their physicians. and why so many like you agree and accept that.

the effect of accupuncture is very controversial. recently there was a very nice study that compared "true" accupuncture (using the proper "spots") to sham accupuncture, where the person who did it just chose arbitrary points for the needles. and guess what-there was no difference what so ever between the two groups.

the power of the placebo effect to alleviate many symptoms that patients suffer from (and possibly even have a true healing power),is understandable, if you think even in physiological terms.

we have done a very nice study in our dept. where we used music as ancillary treatment in patients recieiving chemotherapy. we only checked subjective parameters, such as feeling of desolation, fear, satisfaction etc. all which showed significant improvement after this intervention. but there are also studies that showed a change in physiological paraeters, such as the level of adrenaline and endorphins, in patients that were given music therapy.

when I was a med. student, I conducted a study in the delivery room, of alleviating labor pain using non-pharmacological intervetions (such as soothing music etc.), trying to convince the gynecologist that natural child birth in much more natural and better.

an approach, which is now quite commonplace, but at that time was considered unusual and very controversial, as both physicians and patients thought that a "medical" delivery in which the woman is constantly connected to a fetal monitor, is much more safe and far less painful, then a natural child birth, were the woman is allowed to walk around and do what is physiologically the proper thing, utilizing the force of gravity by walking and standing as opposed to lying down, with her legs in stirrups.

the gynecologists could not ignore the fact that "my" women were much more content, and had a much better labor experience then "theirs", but still it was hard for them to accept it, so one of them came to me and said-well, what you have done is quite convincing, but how do you know that this is not just a placebo effect?

to be honest with you , I did not know what to answer him at that moment, how could I really know? possibly my presence there, and my conviction that this is a better way, my soothing and reassuring approach, my telling them that I myself had done the same during my own child birth, was what made the difference, and not my "intervetion". it took me a while to understand that this was my "intervention".

alice.
chairman
MGA Chairman
1131 posts
Jun 30, 2009
8:47 AM 		Unfortunately UK doctors are not allowed to prescribe Placebo.
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Peter Finney

MGA Chairman
Levitas
984 posts
Jun 30, 2009
9:03 AM 		This from the NHS:

http://www.nhs.uk/Conditions/Acupuncture/Pages/Who-can-use-it.aspx

“Most people who use acupuncture receive private treatment. In the UK, it is estimated that approximately two million people undergo private acupuncture treatment each year.
Although most people have private acupuncture treatment, it is available in some areas through the NHS. Although the availability is currently very limited, approximately one million people have acupuncture treatment through the NHS each year.
NHS acupuncture may be carried out at a hospital, GP surgery, or specialist clinic. You can ask your GP about the availability of acupuncture in your area.”


For reasons why the NHS should not offer acupuncture read: http://counterknowledge.com/2009/06/acupuncture-on-the-nhs-a-dangerous-precedent/

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Levitas
alice
390 posts
Jun 30, 2009
11:10 AM 		you do not perscribe placebo, you give it to your patients.
it is the combination of the feeling of reassurance, hope, compassion, mutual trust and respect and many other things that should form the base for every physician-patient relationship.
I am quite convinced that even if it does not lead to cure, it can do no harm.

alice
chairman
MGA Chairman
1132 posts
Jun 30, 2009
12:15 PM 		In the past UK doctors were allowed to prescribe placebo medications which were then supplied by pharmacist. The patient believed he/she was getting something 'real'. This is not now allowed. 'Ethics'
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Peter Finney

MGA Chairman
alice
393 posts
Jun 30, 2009
12:44 PM 		I personally think that any thing that involves decieving a patient, even if the physician thinks it is for "his own good" is unethical, but I know that not everyone will agree with me.

for me hoensty and trust in any human relationship and obviously in one where you are supposed to put your life and well-being in someone elses hands, is essential, and there is no compromise. that is why I do my best to always tell my patients the truth, even if it is unpleasant or involves my own mistakes or limitations, and expect my physicians to do the same.

and that is why I felt extermely humiliated and insulted when I was told that I "faked" an illness, or felt that my physicians did not believe what I said, and treated me as if I made it up to impress them or some other idea of that sort. to the extent that I was ready to risk my life and not be humiliated like that again.

alice
chairman
MGA Chairman
1133 posts
Jul 01, 2009
1:30 AM 		Alice
That is a great moral position to take - but what is a doctor to do if there is good scientific evidence that a placebo is just as effective as a 'real' medicine, but only works if the patient is convinced that he/she is being given the 'real' thing - especially if the doctor knows that the 'real' medicine had nasty side-effects and the placebo is completely harmless?

In my view the doctor should be free to do what he/she thinks is best for the patient - especially when it involves giving a completely harmless substance.

(I guess homeopathy would fall into this category - so prescribing a homeopathic treatment could regarded as prescribing a placebo - it is an amazing fact that a doctor in UK could legally prescribe such a remedy. What if the doctor prescribed homeopathy but did not believe it had any medicinal value except as a placebo?)
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Peter Finney

MGA Chairman

Last Edited on 1-Jul-2009 1:31 AM

rachel73
111 posts
Jul 01, 2009
3:04 AM 		Hi
just a question as Im confused?

The saline that Drs give you during a Tensilon test is a placebo?

So they do still use them?

I understand in the case of a tensilon test they need to know its a positive test and not the Placebo effect in action.

Rach
Levitas
986 posts
Jul 01, 2009
3:13 AM 		Neither the Tensilon nor the saline would be given as a treatment. It is just a test after all.
The plot thickens if the doctor charges for prescribing a placebo, not "free" on the NHS.
A doctor's dilemma indeed.
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Levitas
alice
394 posts
Jul 01, 2009
8:26 AM 		I think that every moral choice that you make in life carries a price, or else there would be no problem to choose it.

and insisting on honesty and trust in every human relationship, carries a price as well. but, I believe that as a physician, once you allow any kind of dishonest or decieving behaviour, this is a slippery slope. I also think that you would not decieve a person that you respect, and this applies to patients as to every one else.

a physician-patient relationship is not symetrical to begin with. and one has to be very cautious not to make it even less symetrical then it is.

I personally think that giving a patient saline and telling them that it is a real medication, even if it is done as a test is both unethical and quite useless (because it is well known that a response to placebo does not prove anything).

by the way many ethical comittes would not allow the use of placebo, within a clinical trial, unless it is well justified. and if they do allow it, patients would know that they could either recieve a real medication or placebo, and in most circumstances, the physician would be as "blind" as the patient as to what he/she recieved.

I believe that most people would not want to think that their physicians would be ready to decieve them, even if they think it is for their own good.

and last but not least, I still do not think that the effect of the placebo is within the pill that you take, but it is more what is given with it.
and many times I use my perscription pad to write general advice, such as make sure you excercise each day, or eat enough green vegetables etc. which is many times just as effective. many times just listening to your patient, or alleviating their fears, is better then any sugar pill.

I have had quite a few dillemas in my life, but this has never been one of them.
alice