Re: Aletta's questions

[Guest guest]

Aletta,

Unfortunately, MSA does not respond the same way for every patient.

Therefore to adjust your medicines to your form of MSA requires that you

work VERY closely with your doctor. You need to keep records of how you

feel, when you take medicines, what you eat, etc, and share all this

data with your doctor. You don't want to give your doctor 90 pages of

notes if you go three months between visits. Doctors are generally busy

and can not spend an hour with one patient, so we try to summarize our

notes into a half page or less.

The doctor can not explain every medicine and every side effect to you.

Here in the USA, it is the law that every new medicine you receive has a

sheet of information with it. You must read that sheet carefully and

watch for side effects. In the USA you can also ask the pharmacist for

one of the sheets at any time and they must give you one. I thought

Canada was similar. If not, you can go to this website:

http://www.intelihealth.com/IH/ihtIH/WSIHW000/8124/8124.html?k=DrugResourceZoneF\

R408

and type the name (exactly as on the label) into the box. It will then

give you a bunch of sites, look through them until you find your

medicine in the main name (generic name) or in one of the brand names.

That will tell you the complete info on that medicine including all side

effects.

Friends are NOT doctors and you should never listen to them over your

doctor. However, if the doctor has told you to take a medicine and your

friends are telling you what the doctor has already told you, then you

should listen to them as they are trying to help you. As an example, I

have friends with bipolar disorder and if they take their medicine

everyday they are the nicest people you ever met. BUT if they do not

take their medicine every day they become moody and belligerent often

causing harm to themselves or others. So if friends urge them to take

their medicines, they are trying to help them. MSA has no such wonder

drug at this time, if it did, I'll bet most people would listen to their

doctor and take it. I certainly hope they would anyway. Even if the

drug made them have side effects like an upset stomach or slight

confusion (brain fog) at times.

I am on heart medicines that REQUIRE that I don't smoke or drink

alcohol. Those are things I must live with in order to continue to

live. I don't feel that is too great a sacrifice to continue to be able

to play softball and live the life I want. Yet my brother-in-law

decided that was too great a sacrifice and died of heart failure at the

age of 57. I am now 65, and hope to be playing softball at 90.

Everyone is tempted by " snake oil salesmen " , we are all human and an

easy answer always sounds good. Unfortunately, many of these people

accept the easy way out and take these " cures " often causing damage that

can not be repaired. In other cases they put all their money into the

" cure " and end up dying in poverty. Here in the papers last year a

woman was promised a quick cure for breast cancer (which her doctor said

was early and she had about a 90% chance of complete recovery if she had

the operation right away). She went to a " natural medicine " healer who

got over $100,000 (at about $200 per day) from her over the next 18

months before she decided she was feeling bad and saw the doctor again.

She had the operation and other treatments and the last I heard, she was

still alive but barely. If it sounds too good to be true, it most

probably is not true. Especially in medicine, if all these people were

actually being healed, it would be in all the newspapers, news like that

sells newspapers.

Charlotte learned to deal with dyskinesia (excessive uncontrolled

movement) caused by Sinemet by living with slight " Off " times and

adjusting her medicines. She accepted that she had to have 30 minutes

of " Off " time every three hours to keep from having an hour of

dyskinesia. She learned to eat small meals with smaller amounts of

protein to keep from having an upset stomach and to make the medicine

work better. She also learned to trust her doctor to work with her and

carefully explained new symptoms to the doctor. If you take her first

symptom of unexplained fatigue as first signs of MSA, she lived more

than 16 years. If you take first movement disorder diagnoses of

Parkinson's as the beginning, she lived 12 years. If you take the first

time OPCA was mentioned, she lived almost 10 years. And even if you

take the NIH diagnoses of MSA, in 1995 as the beginning, she lived over

7.5 years.

I feel that the PD diagnoses as the " official " beginning of the disorder

and that she lived longer than the " average " . Without the PEG, therapy

and good medical team to help her, I feel she would have died in 1998

when she had her first major bout with infection. That would have been

about " the average " . BUT every MSA patient is different and what helped

Charlotte gain three years of life, may not give every patient three

more years of some quality life. I DO feel she was glad she got the

extra time AND it gave me (I'm selfish) and the family more time to

accept her leaving. During our talks over the last few years, she told

me many times that she would do it over to gain the extra time

(including the pain in the butt PEG - which is a nuisance not a major

problem).

With unknown brain disorders like MSA, CBGD, PSP, etc., you MUST try

different medicines to find which ones help you most. We must have

tried 20 or more medicines and she was taking (I think) seven at death.

Some were dropped almost immediately as I noticed adverse side effects.

Some helped for a time - then stopped helping. Others (like Sinemet)

helped somewhat the whole time (actually almost cured her for the first

18 months) then wore off earlier and earlier (it also caused side

effects which she lived with). As the song says " I Never Promised You a

Rose Garden " , so your doctor can not promise you anything at this time.

BUT they can offer you their experience to help you live with what God

has dealt you in the game of life.

Take care, Bill Werre