Re: MSA - Any supplements or alternative treatments that have worked for anyone?

[Guest guest]

Not for me. My wife wanted me to try using blueberry juice and a couple of

other things. Tastes good, but made no difference. So, not a total loss.

;-)

Regards,

=jbf=

B. Fisher

[Guest guest]

roell29,

No one has really had any real improvement but some have tried CoQ10. There

are a couple of things that help in the attached welcome letter.

Take care, Bill and Charlotte Werre

Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that

MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome,

sporadic OPCA and SND. This email is to give you some introductory

information about the disorder only. It should also clear up some misleading

info on the internet.

First of all, don't believe everything you read about MSA or Shy-Drager

Syndrome. Our experience is that you could have 27 years yet. Many people

have lived more than 20 years with it. There are new research results

published every day. So much brain research has advanced since 1993, that

there is now some hope a cure could be found in as little as five years.

Concentrate on what you can do. Exercise does help keep movement. You need

to start a daily exercise program now (everyday). In particular, you need to

work on range of motion exercises (warm-ups or arthritis type). You must

also work on speech exercises. Your volume will probably go down slowly and

you will not know it, so get Rose's speech exercises and start them now.

They are on this site

http://groups.yahoo.com/group/shydrager/files/Various+MSA+Information+Sheets/Spe\

ech+%26+Swallowing/

Or if you can not reach that site try:

http://freepages.health.rootsweb.com/~charmayn/

More exercises can be found at:

http://www.cnsonline.org/www/archive/parkins/park-03.txt

Another important item with MSA is the fact that your swallowing muscles tend

to lose their strength and if you do not keep them exercised, you will lose

some or all of your ability to swallow. Liquids in particular are difficult

for many MSA patients. This can lead to dehydration and urinary tract

infections (UTI). Infection of any type (UTI, pneumonia, blood, or even

yeast) is dangerous to MSA patients. MSA patients often run a lower than

normal " average " temperature, and may be running a fever at 98.6 degrees. It

is important to know the patient’s “normal” temperature.

Another problem which will probably face you is constipation. This is

somewhat easier to control than other symptoms, but you do have to be aware

of it and treat it. Many are able to treat it with stool softeners, diet or

laxatives. Talk to your doctor about it.

Sleep problems can also be a serious problem with the disorder. Often sleep

apnea or REM problems crop up. If there is any problem with sleep check with

your doctor as it could be serious. The doctor can decide if a sleep study

is needed.

To help the MSA patient, caregivers need to keep a log of symptoms. Daily

temperature, blood pressure (BP), medicine schedules, and eating times are

all important when it comes to deciding what treatment is best. Notes on when

the patient felt best and was most active, as well as when they felt worst

also help the doctor. The patient, caregiver and doctor must become a team

to help the patient the most.

To join the email list send a blank email message to:

shydrager-subscribeegroups

Stick with this list. All of the information above can lead to a longer life

and quality of life for the MSA patient. We, the members of the list have

accumulated a lot of valuable information which can help you. On doctors,

look for a " movement disorder specialist " in your area. They are best (as a

general rule, but not always) at helping you. Let us know what part of the

country you live in and we may be able to help.

Take care Bill and Charlotte Werre

-----------------------------------------------------------

roell29@... wrote:

> Hi, I'm posting this message for my father who has OPCA. Any info

> much appreciated.