Re: you asked...

[Guest guest]

At 5/27/02 06:20 PM Monday, you wrote:

Aletta,

Here are all the medicines you take according to your last note:

1. Neurontin, which I take is

frequently given to MSA patients, many on this list, including

me

Yes this seems to be the only one you take which is normally used for MSA

patients are you aware that you are not supposed to drink alcohol while

taking it? Yes it also has side effects that resemble

MSA = Gabapentin may cause blurred vision, double

vision, clumsiness, unsteadiness, dizziness, drowsiness, or trouble in

thinking. Make sure you know how you react to this medicine before

you drive, use machines, or do anything else that could be dangerous if

you are not alert, well-coordinated, or able to think or see well . If

these reactions are especially bothersome, check with your doctor.

What, so now I'm supposed to be a boozehound?? -

give me a break

2.

Bethanechol Chloride I take because, frankly, without it I am unable to

pee, it is not a painkiller

I could not find this, there may be others that take it

It is also marketed under the name Duvoid, it

allows for better, stronger bladder activity.It too has side effect (not

for me thank goodness), not recommended for long term use - but seeing as

it is the only one that works and the alternative for me is death - who

cares?

3.

Halcion .25 mg is not a painkiller, it induces me to sleep, no other

sleep aids have been effective, and were tried first

If you are taking a benzodiazepine for insomnia (trouble in sleeping):

If you think you need this medicine for

more than 7 to 10 days, be sure to discuss it with your doctor.

Insomnia that lasts longer than this may be a sign of another medical

problem. You may have difficulty sleeping (rebound insomnia) for

the first few nights after you stop taking this medicine.

Benzodiazepines may be habit-forming (causing mental or physical

dependence) , especially when taken for a long time or in high doses.

Some signs of dependence on benzodiazepines are:

A strong desire or need to continue taking

the medicine.

A need to increase the dose to receive the

effects of the medicine.

Withdrawal effects (for example,

irritability, nervousness, trouble in sleeping, abdominal or

stomach cramps, trembling or shaking)

occurring after the medicine is stopped.

In my case (note I'm being specific, this is not a

recommendation) I've taken the same doage for two years without ill

effect. The alternative was total inability to sleep (although I

did pas out for about an hour every 72 hours or so), accompanied by

blackouts, memory loss - POW's can tell you how devastating sleep

deprivation can be.

4.

Dex-amphetamine is not a painkiller, without it I am unable to fully wake

and function - some on the list are taking Ritalin for this, or

pro-vigil, which is not available in Canada

Again note: " Amphetamines should not be used for weight loss

or weight control or to combat unusual tiredness or weakness or

replace rest. When used for these purposes, they may be dangerous to your

health. "

5. the Buscopan was a trail the

doctor gave me, to ease bowel spasm, the other benefits were not

expected, I don't know that he will continue to perscribe, I am just

happy I can enjoy

my life better in the

meantime

I already noted that this medicine causes MSA like symptoms, experts in

gastro problems do NOT believe this sort of drug is good for MSA

patients. Is " bowel spasm " constipation?

No, but constipation and IBS aggrevate each other

and lead to worse conditions such as diverticulitis, impaction and

hemmorage. It does in fact do little more than reduce the degree to

which my bowels spasm, which is relief - in part. Buscopan is also

used in Menier's disease (which has tinnitus and vertigo as symptoms) -

I've yet to get a referral to an ear specialist, but in past tests have

lost 50% hearing in one ear and some in the other as well - without the

'ringing sound' I am now able to hear clearly so this is relief by

misadventure.

6.

the 292's are for pain, dreadful agonizing pain, the combo of headach,

cranial nerve and 'coat hanger' pain, to take as needed, with a prior

heart attack and polycythemia codeine is

cobined with ASA rather than Tylenol

since I need to take aspirin anyway and Tylenol never helped relieve the

pain - I've yet to exceed four pills in one day - I use them sparinly,

even

though my doctor sees no need to be

conservative, he sees pain as stress, I believe he is right, right for

me

I have pointed out several times that codeine causes MSA like symptoms.

You have indeed, my MSA symptoms were evident and

documented before I ever took a preparation containing codeine (1999,

with any regularity not until 2001) - and virtually anything exacerbates

MSA symptoms, including stress and exercise - somewhere you need to make

decisions, even if risks are involved. Doc is ok with stronger

preparation also, I'm just holding off as much as possible, knowing that

undoubtedly this will all get worse

I am happy you

get relief from pain and are able to sleep

Now what do you take for MSA symptoms?

That is what I take, nothing else.

Clarify, which symptoms?

for OH I drink lots of water

for stiffness I do yoga and dance exercises

for being in the dumps I garden, spend time with my dog and three

cats (and tarantula and fish tank), I take photographs, paint, sculpt and

try to get in some human contact

for problems with swallowing and chewing, I make every effort to get

nutrition by whatever means I can afford

slow motility, I eat only what I can hope to process

irregular heartbeat - I cross my fingers and ride the wave

for the crustacean walk - I accept the ridicule and bloody well push

on

for incontenence - I maintain a rigid bathroom schedule

for fatigue - I accept I cannot do everything, concetrate on getting

enough anti-oxigents (tea, vitamin C)

for coat hanger pain - whenever possible rest in a recliner with head

supported, I ration 292's from 6 pm to bed as needed, during the day I

tough it out

for dry eyes - industrial grade eye drops

for dry skin - mix lotion 1 to 1 with olive oil and use liberally

for dry mouth - use a product called Sage, manufactured in Crystal

Lake Il - not sold in Canada but curiously handed out to in-patients at

Lion's Gate hospital - who will not sell it to me either, but my sister

works there and occasionally I can get a tube, chewing minty gum takes

the sting out of dry and cracked membranes, as does the lip moisturizer

(Carbumel)

for poor circulation - move around a lot, check my feet often

(podiatrists are not on the medical plan)

for constipation - senna tea - to soften it, try to eat enough to

keep things shutting down

for possible UTI's - drink lots of fluid, mind the colour, output,

clarity and if a doubt exists see my doctor

for health in general - low caloric input with highest possible

nutritional value (easy to do since I do not crave or experience hunger,

nor can I taste and eating is exhausting), mostly liquid and warm (easier

to swallow), high calcium (my bone desity test was fabulous)

I intend on discussing occasional phlebotomy (taking of a pint of

blood), always had headache symptoms ease up after giving blood, but need

a doctor's order - my own personal theory that keeping the body where it

has no choice but to work at making new cells is a good thing

If I missed a symptom, ask, I too have brain fogg

I have only an occasional tremble in both hands/arms - as a result of

overdoing it or becoming emotional - don't know if that's

parkinsonian or something else

clumsy hands/general incoordination - is that a symptom - I drop

things, fail to notice that I have dropped something - probably because

I've lost sensation - if I close my eyes I also have no idea where body

parts are, or even if my mouth is open or closed

hiccups - for no reason - may be long or short

yawning - for no reason

crocodile tear (one eye only, no particular reason)

lack of allergic responses

lack of irritation when soap is in my eyes

tendency for one eyelid to want to close

spasms in tongue

random muscle spasms

random muscle pain - even if I have only been lying down

small spontaneous bruises the size of the tip of a pencil, mostly

lower legs, arms - who knows?

random pains that feel like bee stings

food or liquid will not go down

food comes up in my throat if I bend over to pick something up

have not experienced a cold of flu in the last four years - which is

odd for me - same with hay fever (saves on allergy meds)

pounding heart - cross my fingers, ride the wave

low BP - move slowly, take deep breaths, toe wiggle, finger wiggle,

stay home

sloppy feet that won't do what you tell them - ankle boots, use my

toes and focus while walking, purposely keep feet apart (one foot below

each hipbone), not very attractive but neither is falling

the gaunt tired grey skinned face - make up and a smile (if I'm going

to have a mask it will be a friendly one)

impending death - hope it comes after my kids stop needing me, and

all this nasty stuff aside, would still like to experience the company of

a good man and feel loved

Take care, Bill

You too, Bill.

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com