Chinese clinics

[Lily1347]

Just wanted to know more about some Chinese specialized clinics for ALS, MS, etc. They claim to slow down or even stop the rate of damage by using a combination of acupuncture, decoctions, and massage. For example, there are several patient reports on Can anyone provide us with authentic info about them?

[Al]

I will provide you with authentic info about them. It doesn't work. They charge thousands of dollars for treatments that give you false hope. I removed the link because we do not advertise places such as that. Save your money.

AL.

[Jane]

Lily Please save your money. I have not heard of one person who has had long term improvement ( improvement over a span of more than 3 months). Some have almost miraculous imrovement but it does not last. The costs are huge.
It is so hard to read about any type of treatment and not try it. My sister was afraid to fly, I would have sold everything I own, filled her so full of meds/ wine anything to get her on a plane IF only there had been some long term positive effect. Now she is gone.
If you have the money to consider this treatment, use it instead to do all the things that will give you wonderful memories in the years to come.
There is a website for PALS only, someone may be able to give you the proper address, on there you may be able to speak with others who are kn owledge about this treatment.
Take care
Jane

[bossman]

I myself have tried this and it was a waste of time and money did nothing

[Charlotte Feldman]

There is a hospital in Hunan province in China which I found in a link on the ALSA website. I corresponded with them for several weeks and collected information.

The clinic is called Traditional Chinese Medicine clinic and the e-mail address is
tcmtreatment@tcmtreatment.net. We began to correspond with them and still do.

The cost of the herbal tea blends was not in the thousands of dollars, it is a couple of hundred, although we did not opt to go to China and stay at their hospital.

We also are using acccupuncture for general relaxation of my husband and I have to agree that it did not seem to make any appreciable difference - with one exception:

The doctor there has stayed in touch with us and offered support and empathy for what we are going through on a regular basis. This is more than the staff at a leading ALS center does.

When one has no hope, one clutches at straws - even Asian bamboo stalks. It seems all that western medicine can do after nearly 200 years is collect data on patient conditions and give out premature brochures on end of life decisions. I guess it isn't profitable to develop drugs to treat this "orphan disease."

Not much is offered as to what caregivers deal with. Not only does this monstrous illness kill motor neurons, it kills the independent spirit and emotional maturity of the patient so that even though the mind is clear, the person you love is already leaving you and the only question is: How long?

[CindyM]

Hi Charlotte- I allowed the link that you provided but understand that AL may disagree. It is very unusual for first time posters to come on here touting a specific treatment, as new members are usually arrive with a lot of questions and concerns about what is happening to their family.

However, you are not promoting this clinic, only that acupuncture has helped your PAL to relax. Thanks for sharing that.

I am not second-guessing your intent - just warning you that we get a lot of posters on here with a hidden agenda of selling some product or service. And they usually talk more about the treatment, rather than share the realities of what it is like for them to live with ALS. Hence my gentle warning. Take care, Cindy

[olly]

i do believe herbal medecine can help with general wellbeing,herbs were used long before modern medecine.
i eat organic food,fresh herbs and use aromatherapy oils only to try to increase my wellbeing and not as a cure.
my own experience with chinese medecine was that my son has eczema.
when he was younger it was really bad,his skin would split and weep.
we tried all kinds of creams,then out of desperation i went to a chinese medecine shop that had posters in the window promising to cure all kinds of things uncluding eczema.
i paid £160/approx $320 for 2weeks treatment of herbs i had to boil up 3 times a day.
i had to wash him down with it and he had to drink some,they stink.
they did not work,i went back and they told me.............it is his diet!!!!...........i said i know that its the dairy products that can effect eczema and we had eliminated all that from his diet.
if chinese medecine can not cure eczema then NOWAY can they claim to cure als,ms or anything else.
take good care.
caroline

[Al]

We'll let this one slide today. Thanks Cindy.

AL.

[katekath]

My mum was on TCM before she was warded. Same sentiments as AL. It doesn't work. I may present a ray of hope, but the truth is, it doesn't work. In fact, the herbs made her feel so bloated and affected her appatite.

[Shane the Pain]

Hi Charlotte:

loved what you wrote, hit me where i'm at with this disease .....

thanks,

Shane

Originally Posted by Charlotte Feldman

There is a hospital in Hunan province in China which I found in a link on the ALSA website. I corresponded with them for several weeks and collected information.

The clinic is called Traditional Chinese Medicine clinic and the e-mail address is
tcmtreatment@tcmtreatment.net. We began to correspond with them and still do.

The cost of the herbal tea blends was not in the thousands of dollars, it is a couple of hundred, although we did not opt to go to China and stay at their hospital.

We also are using acccupuncture for general relaxation of my husband and I have to agree that it did not seem to make any appreciable difference - with one exception:

The doctor there has stayed in touch with us and offered support and empathy for what we are going through on a regular basis. This is more than the staff at a leading ALS center does.

When one has no hope, one clutches at straws - even Asian bamboo stalks. It seems all that western medicine can do after nearly 200 years is collect data on patient conditions and give out premature brochures on end of life decisions. I guess it isn't profitable to develop drugs to treat this "orphan disease."

Not much is offered as to what caregivers deal with. Not only does this monstrous illness kill motor neurons, it kills the independent spirit and emotional maturity of the patient so that even though the mind is clear, the person you love is already leaving you and the only question is: How long?