OPCA-MSA patient

February 23, 2005

I am seeking advice on a case.

I recently took on a patient, female age 58, with a rare degenerative

brain disease called Olivopontocerebellar Atrophy - Multisystem Atrophy

or OPCA-MSA. Her recent MRIs show a shrinking of her brain cells (not

a loss of cells, but an actual cellular atrophy). Her main symptom is

ataxia (loss of the ability to coordinate movements and weakness).

This has been getting progressively worse over the last 5 years. She

also suffers from orthostatic hypotension, but this is less problematic

for her. She is not on any medications a this time as western medicine

has no treatment for this and no idea what may have caused this.

Mentally, she is 'all there' and does not suffer any dementia, although

this is like to develop as the disease progresses. She is otherwise

healthy with no significant illnesses or trauma in her history. At

this point, she needs help getting up and walking. She is struggling to

remain as independent as possible for as long as possible.

TCM examination revealed the following;

CC - major problems with muscle weakness and coordination. Her legs

tend to collapse from under her when she walks. She has difficulty

coordinating any movement and has difficulty physically forming words

to speak. She does not tend to have tremors, but does have some

localized shaking when trying to move a body part. Her thinking is

fairly clear, but she feels like her senses are behind a veil. She is

frustrated with the prospect of losing independent mobility and with

her increasing difficulty with communication.

Pulses: Generally thin and wiry and disappear when pressed. Her right

cun (Lung) pulse was noticeably stronger and more superficial than the

rest. Chi (Kidney, both sides) pulses were thready. Rate was within

normal limits. BP 118/72.

Tongue: dark pink (slightly reddish) with no coat and some small

horizontal cracks. Sublingual veins were dark, but not distended.

General observation - sitting quietly, you'd never know there was

anything wrong with her. Her color is good and her eyes bright. She

has a very slight malar flush.

Pain - constant, slight, dull frontal headache pain. She also says she

bruises easily and that she falls down often d/t the muscle weakness

and lack of coordination.

Sleep - mild insomnia with trouble falling asleep and returning to

sleep after waking.

BM / urination - daily normal stool. Urine is normal color and volume

but she has some urgency and frequency (particularly problematic with

her mobility issues). Nocturia 3 - 4 times per night.

Digestion - " feels full " all the time and burps after eating or

drinking anything. No abdominal tenderness.

Menopause - stopped menstruating 5 years ago (coincided with the onset

of OPCA-MSA symptoms) and has had hot flashes and night sweats 3 - 4

times per day and 3 times per night since. Otherwise she tends to feel

cold.

Diet - generally quite good and includes a variety of healthy foods.

I have only seen her once so far (initial intake and treatment). I

diagnosed Kidney Yin, Qi and Jing deficiency along with a deficiency of

Marrow. As a start, I did a very gentle 4 needle technique treatment

to tonify Kidney and gave her a mushroom tonic tincture (ganoderma

mushroom/ling zhi; astragalus/huang qi; cordyseps/dong chong xia cao;

poria/fu ling; siberian ginseng/ci wu jia; licorice/gan cao) with

instructions to mix it with hot water to drive off the alcohol.

I'd like to treat her symptoms more aggressively with both acupuncture

and herbs in order to provide her with some relief from the ataxia

(loss of coordination and weakness).

Any suggestions on this case would be most welcome.

-jude

--

Judith Saxe, Licensed Acupuncturist

Qing Ting Acupuncture LLC

Denver, Colorado

(303) 964-1996

http://www.QingTingAcupuncture.com

February 23, 2005

I find it very interesting when a problem can be traced to an event. As

this is now a chronic concern many systems will probably be needing work. I

wonder if she took or was placed on any of the wonderful western medications

for hormonal/gyn cycle problems. It might be that the loss of blood during

her cycle may have kept it at bay, uncertain but one possibility.

As an aside to this, I remember attending a lecture by Gary Young ND about a

growing tendency of people to grow larger digestive organs while the size of

the brain is decreasing. He attributed this to a lack of hormonal

production. I think it was HGH (human growth hormone) but not entirely

sure. To this end, he added that we were not digesting our food and our

brain was taking the brunt of it. It does sound like she has some digestive

problems, which you might want to consider involving a nutritionist

(enzymes, vit and minerals as well as EFA's). If you are interested, Dr.

Young has an impressive clinic where people with serious conditions come to

heal and many thousand of serious cases have. You can get in touch with

them at the website.

(http://youngliving.younglivingworld.com/)

Back to your case. As the spleen and stomach are sources of post-natal

jing, some work on them would make sense. The rebellion of st qi may get

worse with addition of yin/jing tonics if not modified with digestant herbs.

From a TCM point perspective, one might want to consider the confluent

point of marrow, points on head (for Jing), etc. Points that come to mind:

Cv 12, St 36, 40, Sp 3, 6, Kid 3, 6, 7, Gb 39, Du 16, 20, Lu 5, LI 10 and

points on the Ub channel as well. In addition to the spleen/stomach

rebellion you mentioned that the patient complained of her senses being

behind a veil " (sounds a little like a phlegm misting heart orifices. This

might be due to the yang of heart unable to move or support her. Yang makes

sense for both kidney and possibly spleen (muscles as well).

From another perspective, since the lung has an apparent excess drain it to

the son (kidney), which is weak anyway. Has she had a lot of unresolved

grief prior to this happening? Just a thought. I like the idea of gently

opening up jing luo to get a better idea of what is really happening and

then tonifying the heck out of her. Sorry, that slipped. Good luck on this

and keep us in the loop.

Later

Mike W. Bowser, L Ac

>Judy Saxe <jsaxe

>Chinese Medicine

> ,

>Chinese Medicine , AAC LIST

><AAC-List >

> OPCA-MSA patient

>Wed, 23 Feb 2005 12:34:03 -0700

>

>I am seeking advice on a case.

>

>I recently took on a patient, female age 58, with a rare degenerative

>brain disease called Olivopontocerebellar Atrophy - Multisystem Atrophy

>or OPCA-MSA. Her recent MRIs show a shrinking of her brain cells (not

>a loss of cells, but an actual cellular atrophy). Her main symptom is

>ataxia (loss of the ability to coordinate movements and weakness).

>This has been getting progressively worse over the last 5 years. She

>also suffers from orthostatic hypotension, but this is less problematic

>for her. She is not on any medications a this time as western medicine

>has no treatment for this and no idea what may have caused this.

>Mentally, she is 'all there' and does not suffer any dementia, although

>this is like to develop as the disease progresses. She is otherwise

>healthy with no significant illnesses or trauma in her history. At

>this point, she needs help getting up and walking. She is struggling to

>remain as independent as possible for as long as possible.

>

>TCM examination revealed the following;

>

>CC - major problems with muscle weakness and coordination. Her legs

>tend to collapse from under her when she walks. She has difficulty

>coordinating any movement and has difficulty physically forming words

>to speak. She does not tend to have tremors, but does have some

>localized shaking when trying to move a body part. Her thinking is

>fairly clear, but she feels like her senses are behind a veil. She is

>frustrated with the prospect of losing independent mobility and with

>her increasing difficulty with communication.

>

>Pulses: Generally thin and wiry and disappear when pressed. Her right

>cun (Lung) pulse was noticeably stronger and more superficial than the

>rest. Chi (Kidney, both sides) pulses were thready. Rate was within

>normal limits. BP 118/72.

>

>Tongue: dark pink (slightly reddish) with no coat and some small

>horizontal cracks. Sublingual veins were dark, but not distended.

>

>General observation - sitting quietly, you'd never know there was

>anything wrong with her. Her color is good and her eyes bright. She

>has a very slight malar flush.

>

>Pain - constant, slight, dull frontal headache pain. She also says she

>bruises easily and that she falls down often d/t the muscle weakness

>and lack of coordination.

>

>Sleep - mild insomnia with trouble falling asleep and returning to

>sleep after waking.

>

>BM / urination - daily normal stool. Urine is normal color and volume

>but she has some urgency and frequency (particularly problematic with

>her mobility issues). Nocturia 3 - 4 times per night.

>

>Digestion - " feels full " all the time and burps after eating or

>drinking anything. No abdominal tenderness.

>

>Menopause - stopped menstruating 5 years ago (coincided with the onset

>of OPCA-MSA symptoms) and has had hot flashes and night sweats 3 - 4

>times per day and 3 times per night since. Otherwise she tends to feel

>cold.

>

>Diet - generally quite good and includes a variety of healthy foods.

>

>I have only seen her once so far (initial intake and treatment). I

>diagnosed Kidney Yin, Qi and Jing deficiency along with a deficiency of

>Marrow. As a start, I did a very gentle 4 needle technique treatment

>to tonify Kidney and gave her a mushroom tonic tincture (ganoderma

>mushroom/ling zhi; astragalus/huang qi; cordyseps/dong chong xia cao;

>poria/fu ling; siberian ginseng/ci wu jia; licorice/gan cao) with

>instructions to mix it with hot water to drive off the alcohol.

>

>I'd like to treat her symptoms more aggressively with both acupuncture

>and herbs in order to provide her with some relief from the ataxia

>(loss of coordination and weakness).

>Any suggestions on this case would be most welcome.

>

>-jude

>--

>Judith Saxe, Licensed Acupuncturist

>Qing Ting Acupuncture LLC

>Denver, Colorado

>(303) 964-1996

>http://www.QingTingAcupuncture.com

>

February 23, 2005

On Feb 23, 2005, at 2:46 PM, mike Bowser wrote:

> ... It does sound like she has some digestive

> problems, which you might want to consider involving a nutritionist

> (enzymes, vit and minerals as well as EFA's).

She has seen a nutritionist, however, the person she saw has been

having her do some very odd things (i.e. butter day), so her experience

has not been good. She is taking a good quality multivitamin and

mineral supplement as well as EFAs. Her diet is pretty healthy.

Her feeling of fullness and the burping are the only digestive symptoms

she has and they are relatively recent (last 6 months or so). I

suspect that the CNS degeneration is affecting her peristalsis rather

than the other way around. I am keeping in mind that she probably does

have either some spleen qi deficiency or reverse stomach qi going on as

well.

> Back to your case. As the spleen and stomach are sources of post-natal

> jing, some work on them would make sense. The rebellion of st qi may

> get

> worse with addition of yin/jing tonics if not modified with digestant

> herbs.

> From a TCM point perspective, one might want to consider the

> confluent

> point of marrow, points on head (for Jing), etc. Points that come to

> mind:

> Cv 12, St 36, 40, Sp 3, 6, Kid 3, 6, 7, Gb 39, Du 16, 20, Lu 5, LI 10

> and

> points on the Ub channel as well. In addition to the spleen/stomach

> rebellion you mentioned that the patient complained of her senses being

> behind a veil " (sounds a little like a phlegm misting heart orifices.

> This

> might be due to the yang of heart unable to move or support her. Yang

> makes

> sense for both kidney and possibly spleen (muscles as well).

>

> From another perspective, since the lung has an apparent excess drain

> it to

> the son (kidney), which is weak anyway. Has she had a lot of

> unresolved

> grief prior to this happening? Just a thought. I like the idea of

> gently

> opening up jing luo to get a better idea of what is really happening

> and

> then tonifying the heck out of her. Sorry, that slipped. Good luck

> on this

> and keep us in the loop.

Thanks for the input!

-judy saxe

February 23, 2005

I had a long-time client with a dx of SCA 6. I saw her weekly for four or five

years. I tx'd

her mostly as a Spleen deficiency, sometimes Kidney. She had a lot of

phlegm-damp signs,

and responded well to Ban Xia Bai Zhu Tian Ma Tang, etc.

She had constant nystagmus which was only alleviated by auriculotherapy --

nothing else

worked. I used vaccarria seeds and alternated ears each week. She got a lot of

direct

moxibustion, I also did a lot of bodywork with her: tuina, shiatsu, sotai,

passive stretching,

etc, and all this helped a lot. It was very time-consuming but it did improve

her gait,

balance, speech, etc.

She also went to a clinic in Mexico every few months to get injections of bovine

cerebellar

cells and some other things.

I referred her to another practitioner when I moved away, and I lost track of

her, so I can't

say how she's been doing in the long term.

robert hayden

Chinese Medicine , Judy Saxe <jsaxe@q...>

wrote:

> I am seeking advice on a case.

>

> I recently took on a patient, female age 58, with a rare degenerative

> brain disease called Olivopontocerebellar Atrophy - Multisystem Atrophy

> or OPCA-MSA. Her recent MRIs show a shrinking of her brain cells (not

> a loss of cells, but an actual cellular atrophy). Her main symptom is

> ataxia (loss of the ability to coordinate movements and weakness).

> This has been getting progressively worse over the last 5 years. She

> also suffers from orthostatic hypotension, but this is less problematic

> for her. She is not on any medications a this time as western medicine

> has no treatment for this and no idea what may have caused this.

> Mentally, she is 'all there' and does not suffer any dementia, although

> this is like to develop as the disease progresses. She is otherwise

> healthy with no significant illnesses or trauma in her history. At

> this point, she needs help getting up and walking. She is struggling to

> remain as independent as possible for as long as possible.

>

March 8, 2005

, Judy Saxe <jsaxe@q...>

wrote:

>

> I am seeking advice on a case.

>

> I recently took on a patient, female age 58, with a rare

degenerative

> brain disease called Olivopontocerebellar Atrophy - Multisystem

Atrophy

> or OPCA-MSA. Her recent MRIs show a shrinking of her brain cells

(not

> a loss of cells, but an actual cellular atrophy). Her main

symptom is

> ataxia (loss of the ability to coordinate movements and

weakness).

*Jude,

This disorder is similiar in progression and symptoms to the

hereditary ataxias. The National Ataxia Foundation is a support

group for all ataxias and they also fund research in these

disorders. Their website is www.ataxia.org. There has been some

interesting research on some types of ataxias and CoQ10

supplementation. It seems it(CoQ10) is low in some of these

disorders and with supplementation of a fairly high dose 300mg to

1000mg it can help with the ataxic symptoms especially in those that

are just starting n the signs of the disease. i believe this is on

the website. If not I have a copy of an abstract i can fax you if

you want.

Jill Likkel

> I have only seen her once so far (initial intake and treatment).

I

> diagnosed Kidney Yin, Qi and Jing deficiency along with a

deficiency of

> Marrow. As a start, I did a very gentle 4 needle technique

treatment

> to tonify Kidney and gave her a mushroom tonic tincture (ganoderma

> mushroom/ling zhi; astragalus/huang qi; cordyseps/dong chong xia

cao;

> poria/fu ling; siberian ginseng/ci wu jia; licorice/gan cao) with

> instructions to mix it with hot water to drive off the alcohol.

>

> I'd like to treat her symptoms more aggressively with both

acupuncture

> and herbs in order to provide her with some relief from the ataxia

> (loss of coordination and weakness).

> Any suggestions on this case would be most welcome.

>

> -jude

> --

> Judith Saxe, Licensed Acupuncturist

> Qing Ting Acupuncture LLC

> Denver, Colorado

> (303) 964-1996

> http://www.QingTingAcupuncture.com

Jude,

Some suggestions; It looks as though there is food stagnation so

that should be addressed as well or with the tonic herbs.

My patient who has a hereditary ataxia has quite a bit of phlegm so

be on the lookout for it. Also Kidney yang vacuity along with qi

and jing (yin in my patient is less of an issue). And of course

Spleen qi not supporting the muscles has to be addressed.

Good luck and keep in touch about this case if you can.

Jill Likkel

March 9, 2005

On Mar 8, 2005, at 11:45 PM, Jill A. Likkel wrote:

> CHA Judy Saxe <jsaxe@q...>

> wrote:

>> I am seeking advice on a case.

>>

>> I recently took on a patient, female age 58, with a rare

>> degenerative brain disease called Olivopontocerebellar

>> Atrophy - Multisystem Atrophy or OPCA-MSA...

> *Jude,

> This disorder is similiar in progression and symptoms to the

> hereditary ataxias. The National Ataxia Foundation is a support

> group for all ataxias and they also fund research in these

> disorders. Their website is www.ataxia.org. There has been some

> interesting research on some types of ataxias and CoQ10

> supplementation. It seems it(CoQ10) is low in some of these

> disorders and with supplementation of a fairly high dose 300mg to

> 1000mg it can help with the ataxic symptoms especially in those that

> are just starting n the signs of the disease. i believe this is on

> the website. If not I have a copy of an abstract i can fax you if

> you want.

> Jill Likkel

Thanks Jill. I did find their web site and have read just about

everything on it (Google Scholar has been very helpful as has PubMed).

She is already taking fairly high doses of CoQ10, a well as EFAs, a

little daily caffeine (there have been studies to suggest this is

helpful) and has a pretty good, balanced diet with the occasional treat

(sometimes sweet, sometimes salty - she still enjoys food). She and

her husband have done a lot of research on their own long before they

came to see me.

They have been to a nutritionist, and didn't have the best experience

with her (her ideas were on the extreme side for them and from what

I've heard, I would agree). They are open to seeing a different

western nutritionist (Denver area) if anyone has a referral. In fact,

a referral to a PT/OT clinic in the Denver area would also be

appreciated as the one she was going to told her they can't help her

improve and sent her away (this _really_ makes me angry as she needs to

have the therapy to help her keep moving and functional for as long as

possible).

She did respond quite well to her first treatment. At her second visit

I did the 4 needle technique to tonify the kidneys again and added

scalp acupuncture along the motor line. I showed her husband how to do

a gentle bowel massage to keep her intestinal peristalsis regular (it

seems to be affected by the ataxia as well - they feel like they're

moving, but not in a very coordinated way). She is definitely showing

kidney yin deficiency signs. I will update on her treatment and

progress after I see her again this week.

-judy saxe

March 9, 2005

I watched a program while ago on organ transplants that referenced the

omega 6 group as immune suppressors. There were no references to EPA or DHA. I

believe it may have even been a specific as corn oil for immune suppression

for transplants, but I just cannot say for sure if they actually said corn oil

or I just thought it.

I would be very surprised if reasonable amounts of EPA or DHA were found

to be immune suppressors.

Chris

In a message dated 3/9/2005 10:17:32 PM Eastern Standard Time,

jilllikkel writes:

, " "

<alonmarcus@w...> wrote:

> There are many studies showing high EPA-DHA to suppress NKC. In

fact some MD are now using it on transplant patients. We do not know

however what it means for the general population. I just talked to

Thomas Nufert, one of the worlds best biochemists and he told me

about some of these upcoming studies. He is the one that discovered

what occurs on a cellular level in insulin resistance

>

Do you know the journals or references where these studies are

published? I would like to read them. i did a quick search on NKC

and EFAs and didn't find anything yet.

Thanks

Jill Likkel

March 9, 2005

My the way there are some new worries regarding fish oils suppressing NKC

March 9, 2005

On Mar 9, 2005, at 4:13 PM, wrote:

> My the way there are some new worries regarding fish oils suppressing

> NKC

>

March 9, 2005

, " "

<alonmarcus@w...> wrote:

> My the way there are some new worries regarding fish oils

suppressing NKC

>

Alon,

Please forward on any information you may have on this subject.

Thanks,

Jill Likkel

March 9, 2005

There are many studies showing high EPA-DHA to suppress NKC. In fact some MD are

now using it on transplant patients. We do not know however what it means for

the general population. I just talked to Thomas Nufert, one of the worlds best

biochemists and he told me about some of these upcoming studies. He is the one

that discovered what occurs on a cellular level in insulin resistance

March 9, 2005

, " "

<alonmarcus@w...> wrote:

> There are many studies showing high EPA-DHA to suppress NKC. In

fact some MD are now using it on transplant patients. We do not know

however what it means for the general population. I just talked to

Thomas Nufert, one of the worlds best biochemists and he told me

about some of these upcoming studies. He is the one that discovered

what occurs on a cellular level in insulin resistance

>

Do you know the journals or references where these studies are

published? I would like to read them. i did a quick search on NKC

and EFAs and didn't find anything yet.

Thanks

Jill Likkel

March 9, 2005

Do you know the journals or references where these studies are

published? I would like to read them. i did a quick search on NKC

and EFAs and didn't find anything yet.

>>>>>>>I think they are still in the pipeline

March 9, 2005

I would be very surprised if reasonable amounts of EPA or DHA were found

to be immune suppressors.

>>>>It looks like surprise is what we are into

March 9, 2005

On Mar 9, 2005, at 8:07 PM, wrote:

> There are many studies showing high EPA-DHA to suppress NKC. In fact

> some MD are now using it on transplant patients. We do not know

> however what it means for the general population. I just talked to

> Thomas Nufert, one of the worlds best biochemists and he told me about

> some of these upcoming studies. He is the one that discovered what

> occurs on a cellular level in insulin resistance

>

I still can't follow this conversation until someone clarifies what NKC

is. The OPCA-MSA (OlivoPontoCerebellarAtrophy - MultiSystem Atrophy)

patient is mine, so I'd really like to know.

Also what is EPA (other than environmental protection agency)? Some

type of essential fatty acid?

Speaking in acronyms is not working for me.

-jude

--

Judith Saxe, Licensed Acupuncturist

Qing Ting Acupuncture LLC

Denver, Colorado

(303) 964-1996

http://www.QingTingAcupuncture.com

March 10, 2005

Hi Jude,

(There is some information suggesting a possible genetic component to OPCA-MSA)

[i'm sure would appreciate more of a TCM approach to treating this

patient and this should not be overlooked. It is important however to bear in

mind that dietary recommendations & lifestyle are one of the five pilliars of

TCM.]

A study I read showed that CoEnzyme Q10 restore energy production but did not

prevent cellular death. But when combined with niacinamide, both cellular energy

production and neuron protection is seen. The article recommend for those with

neurodegenerative disorders, a combination of CoQ10, acetyl-L carnitine,

niacinamide, riboflavin, methylcobalamin, and thiamine.

Other research that I read suggests a different pathomechanism other than the

Natural Killer Cells (NKC) involvement. The postmortem cerebellar extracts from

a patient with olivopontocerebellar atrophy (OPCA) showed & shy;Neuronal (EAAT4)

excitatory amino acid transporters and the AMPA-type glutamate receptor subunits

GluR2 and GluR3 in the olivopontocerebellar atrophy (OPCA) sample was correlated

with the selective loss of Purkinje cells. This suggested that excitotoxic

mechanism could play a role in the pathogenesis of the selective neuronal cell

death in this disorder.

Additional information indicated the possible involvement of dietary intake or

at least the importance of diet in possible minimizing the disease progression.

I am attaching a file with more information. I have included web links and

inserted my comments in italics with key words bold and important points

highlighted although I apologize for the loose format of the material. Please

feel free to contact me at Acusteve1 should you have any questions

regarding the infomation that I am sending.

Also, please remind me if you think it is necessary, that I have some

information in my notes on acupoints that stimulate NKC. Although I have no

scientific information supporting this idea, I wonder if sedating those points

would cause a decrease in NKC levels? This raises an interesting ethical

question. What is the appropriate course of action in pursuing this idea?

Obviously it would seem irresponsible an perhaps unethical to experiment with a

patients health, it could actually stimulate NKC levels and make their condition

worse. What is the correct approach here?

Sincerly,

Steve

jude <jsaxe wrote: