RE: Leg Spasms-Fred Seeker

[Guest guest]

Hi Fred,

I am caregiver to my husband Jeff, who was dx'd with MSA in July 2001. As

you probably know already,

symptoms and treatment vary so much from patient to patient, so it's always

best to have your medical team try the different therapies out there. But

I will share with you what Jeff's medications are. Of the medications you

mentioned, he is on the neurontin (1600-2400 mg/day) for the leg spasms,

and the clonazepam for the restless legs. He was never on baclofen. His

symptoms are VERY similar to yours. Leg spasms are rare, as he has been on

the neurontin a long time, but the heaviness, weakness of muscles,

shortness of breath are all present in Jeff's symptoms. Jeff really needs

to pace himself and be careful about overstimulating his nervous system.

Any stress, upset or change in routine really has an affect on him. It

can bring him down for hours or days sometimes. For instance, we do our

shopping at Wal-Mart or the grocery store in the late evening when it's not

crowded. We haven't been to a restaurant in over a year. We just order

take out and have a candlelit picnic on the living room floor. I guess you

need to learn how to be creative!

I hope that the doctors will be able to help you find the right " cocktail "

to manage your symptoms. Just remember that because of the progressive

nature of the condition, what works now may not work in 6 months. Be

patient and try to find a doctor who is patient and willing to listen to

you. We are VERY lucky in that we have a primary care doctor (internist)

who has been WONDERFUL in doing research in to MSA, and listens to both

Jeff and myself when we present new symptoms to him. He has given Jeff an

" open door " policy. Jeff doesn't even have to make an appointment anymore.

They work him in any time!

Keep in touch and let us know what your doctors come up with.

Regards,

M.

FRED WROTE:

Message: 25

Date: Tue, 15 Oct 2002 21:00:41 +1300

Subject: Leg Spasms - Drugs - Massage

I seek your help for discussions with my medical team.

I have SCA - probably OPCA - possibly MSA. Main problem walking (ataxia).

About six weeks ago I started taking Baclofen tablets for severe and very

painful night spasms in my left leg on which I wear an AFO (brace) during

the day. For three weeks I have been up to a dose of 3x10 mg a day which

is the

minimum the drug manuals and doctors consider effective.

Since then there has been a marked progressive decline in my ability to

walk

caused perhaps, in part, by increased fatigue,

especially in the evening, but also by such things as reduced muscle

strength. Even my arms feel heavier and less responsive.

There's also shortness of breath, particularly when I exercise, and at

night

after I have retired.

1. Has anybody else had these side-effects, and, what have you done about

it?

I take no other drugs, but do take vitamins, NAC (N Acetyl L-Cysteine)

and Co-enzyme Q10.

It is known Baclofen can have these side-effects, but they usually

disappear after " several weeks " .

How do you define several weeks - from when you first start Baclofen

or

from the time you reach your maximum dose?

Breathing problems can be caused by an overdose, but you would hardly

normally call 30 mgs an overdose!

2 I still get spasms, but Baclofen has taken the edge off them, and I can

live with them now.

Is there another drug that will do the same but without side-effects?

The following drugs are not available here:

Baclofen Gel

Zanaflex

Soma

Propranalol

Robaxin

Some drugs that have been suggested are:

Clonazepam

epam

Neurontin

I have already tried Quinine Sulphate which didn't work. I get enough

water, use heat, ointments and exercises/stretching, but it is not enough.

3. I know the symptoms I have can be caused by a general deterioration of

OPCA/MSA but when I reduced the dose to

20 mg the problems diminished and the spasms return with a vengence.

This would tend to indicate a link with the

Baclofen. There are no indications the spasms are caused by something

else like an infection.

4. I have considered taking 20 mg at night and 10 mg late afternoon but

you are supposed to take it in equal doses through-

out the day and what would 20mg at night do to my breathing?

5. With the spasms I get severe pain so I use a pain-killer - at the

moment

Cataflam (diclofenac) which dulls the pain but may

not be suitable longterm. Without a pain-killer even the reduced

spasms will keep me awake or wake me up with twitch-

ing of my leg and pain.

Any suggestions for an alternative pain-killer?

6. An apparent peculiarity with my condition is that I only get the spasms

(and sometimes

associated cramps) when lying down for half an hour

or more. The time of day doesn't matter. The spasms come much more

frequently when my leg is bent which it invariably

will be sometime during my sleep. Does anyone know why this is?

My neurologist doesn't know.

Can this knowledge somehow be used to find a solution to the spasm

problem?

I have raised the head of the bed by 15 cm. It makes no difference and

I

don't want to stand up and sleep

7. On a related subject I am interested in non-drug remedies for my

ataxia/movement problems and pain.

Two possible treatments I have heard of:

A) Meir Schneider's self-healing programme. Run from San Francisco.

Best known for

treatment of vision problems, muscular dystrophy and multiple

sclerosis.

Author of a couple of books, videos and audio tapes

Website: http://www.self-healing.org

I know somebody with Sca 3 who has received his treatment with some

success. Basically it is a combination of

exercises, massage, breathing exercises and visualization.

I am communicating with Meir Schneider who has never worked with

anybody

with my condition but says that he is almost sure that his work can be

of help. He

believes the cerebrum can assume control when the lower parts of the

brain and the spinal cord do not

work as well as they should.

[JBF - any thoughts on this?]

Has anybody tried his methods? All comments invited.

The Bowen Technique also known as Bowen Therapy is simply put a type

of massage used to alleviate chronic pain. It involves stimulation of

the autonomic nervous system

and is practised a fair bit in the U.K. and elsewhere.

See: http://www.thebowentechnique.com/

Any comments?

Sorry about the length of this message. Thank you in advance for your

help.

Fred Seeker

[Guest guest]

Hi Fred,

I am caregiver to my husband Jeff, who was dx'd with MSA in July 2001. As

you probably know already,

symptoms and treatment vary so much from patient to patient, so it's always

best to have your medical team try the different therapies out there. But

I will share with you what Jeff's medications are. Of the medications you

mentioned, he is on the neurontin (1600-2400 mg/day) for the leg spasms,

and the clonazepam for the restless legs. He was never on baclofen. His

symptoms are VERY similar to yours. Leg spasms are rare, as he has been on

the neurontin a long time, but the heaviness, weakness of muscles,

shortness of breath are all present in Jeff's symptoms. Jeff really needs

to pace himself and be careful about overstimulating his nervous system.

Any stress, upset or change in routine really has an affect on him. It

can bring him down for hours or days sometimes. For instance, we do our

shopping at Wal-Mart or the grocery store in the late evening when it's not

crowded. We haven't been to a restaurant in over a year. We just order

take out and have a candlelit picnic on the living room floor. I guess you

need to learn how to be creative!

I hope that the doctors will be able to help you find the right " cocktail "

to manage your symptoms. Just remember that because of the progressive

nature of the condition, what works now may not work in 6 months. Be

patient and try to find a doctor who is patient and willing to listen to

you. We are VERY lucky in that we have a primary care doctor (internist)

who has been WONDERFUL in doing research in to MSA, and listens to both

Jeff and myself when we present new symptoms to him. He has given Jeff an

" open door " policy. Jeff doesn't even have to make an appointment anymore.

They work him in any time!

Keep in touch and let us know what your doctors come up with.

Regards,

M.

FRED WROTE:

Message: 25

Date: Tue, 15 Oct 2002 21:00:41 +1300

Subject: Leg Spasms - Drugs - Massage

I seek your help for discussions with my medical team.

I have SCA - probably OPCA - possibly MSA. Main problem walking (ataxia).

About six weeks ago I started taking Baclofen tablets for severe and very

painful night spasms in my left leg on which I wear an AFO (brace) during

the day. For three weeks I have been up to a dose of 3x10 mg a day which

is the

minimum the drug manuals and doctors consider effective.

Since then there has been a marked progressive decline in my ability to

walk

caused perhaps, in part, by increased fatigue,

especially in the evening, but also by such things as reduced muscle

strength. Even my arms feel heavier and less responsive.

There's also shortness of breath, particularly when I exercise, and at

night

after I have retired.

1. Has anybody else had these side-effects, and, what have you done about

it?

I take no other drugs, but do take vitamins, NAC (N Acetyl L-Cysteine)

and Co-enzyme Q10.

It is known Baclofen can have these side-effects, but they usually

disappear after " several weeks " .

How do you define several weeks - from when you first start Baclofen

or

from the time you reach your maximum dose?

Breathing problems can be caused by an overdose, but you would hardly

normally call 30 mgs an overdose!

2 I still get spasms, but Baclofen has taken the edge off them, and I can

live with them now.

Is there another drug that will do the same but without side-effects?

The following drugs are not available here:

Baclofen Gel

Zanaflex

Soma

Propranalol

Robaxin

Some drugs that have been suggested are:

Clonazepam

epam

Neurontin

I have already tried Quinine Sulphate which didn't work. I get enough

water, use heat, ointments and exercises/stretching, but it is not enough.

3. I know the symptoms I have can be caused by a general deterioration of

OPCA/MSA but when I reduced the dose to

20 mg the problems diminished and the spasms return with a vengence.

This would tend to indicate a link with the

Baclofen. There are no indications the spasms are caused by something

else like an infection.

4. I have considered taking 20 mg at night and 10 mg late afternoon but

you are supposed to take it in equal doses through-

out the day and what would 20mg at night do to my breathing?

5. With the spasms I get severe pain so I use a pain-killer - at the

moment

Cataflam (diclofenac) which dulls the pain but may

not be suitable longterm. Without a pain-killer even the reduced

spasms will keep me awake or wake me up with twitch-

ing of my leg and pain.

Any suggestions for an alternative pain-killer?

6. An apparent peculiarity with my condition is that I only get the spasms

(and sometimes

associated cramps) when lying down for half an hour

or more. The time of day doesn't matter. The spasms come much more

frequently when my leg is bent which it invariably

will be sometime during my sleep. Does anyone know why this is?

My neurologist doesn't know.

Can this knowledge somehow be used to find a solution to the spasm

problem?

I have raised the head of the bed by 15 cm. It makes no difference and

I

don't want to stand up and sleep

7. On a related subject I am interested in non-drug remedies for my

ataxia/movement problems and pain.

Two possible treatments I have heard of:

A) Meir Schneider's self-healing programme. Run from San Francisco.

Best known for

treatment of vision problems, muscular dystrophy and multiple

sclerosis.

Author of a couple of books, videos and audio tapes

Website: http://www.self-healing.org

I know somebody with Sca 3 who has received his treatment with some

success. Basically it is a combination of

exercises, massage, breathing exercises and visualization.

I am communicating with Meir Schneider who has never worked with

anybody

with my condition but says that he is almost sure that his work can be

of help. He

believes the cerebrum can assume control when the lower parts of the

brain and the spinal cord do not

work as well as they should.

[JBF - any thoughts on this?]

Has anybody tried his methods? All comments invited.

The Bowen Technique also known as Bowen Therapy is simply put a type

of massage used to alleviate chronic pain. It involves stimulation of

the autonomic nervous system

and is practised a fair bit in the U.K. and elsewhere.

See: http://www.thebowentechnique.com/

Any comments?

Sorry about the length of this message. Thank you in advance for your

help.

Fred Seeker