The Medication List

[Guest guest]

In a message dated 10/24/00 1:24:41 PM Eastern Daylight Time,

liliwigg@... writes:

<< do you think that WE, the CMTers,

somewhere should have a Meds List put together by US? >>

I like to see how our list compared to there's

E

[Guest guest]

I think it's a great idea. We know more about this condition than most

doctors!

C

[Guest guest]

In a message dated 10/24/00 12:10:41 PM, lls@... writes:

<< We must remember that CMT is always progressive and is characterized by

exacerbation and plateaus. It gets worse and then progression may slow down

or even stop for a period of time. Then it may get suddenly worse. If a few

of us got worse after a medication it may or may not be due to the

medication.. Those individuals MAY have gotten worse without it. We are in

no position to evaluate that part. >>

Well said, Lamar. I wish everyone could internalize that philosophy. It helps

in the comprehension of what we are dealing with from having CMT.

Snake oil and quack cures are sold because of the natural ups and downs of

many diseases, not just CMT.

Kat

[Guest guest]

Gretchen and others.

Lamar here,

While that sounds good it is not feasible and has no medical accuracy.

Different individuals react differently to many medications--whether or not they

have CMT. The drug that you could not take may help another. I can think of

no drug we have discussed that some did not say helped them and others said made

them worse or they could not tolerate them. I am allergic to penicillin. One

dose could potentially kill me. It could also save the life of some of you.

Drug research must be done in a scientific manner and utilize double blind

studies for accuracy. It is well beyond the scope of laymen.

When Prozac first came out there was much furor because some on it had

behavioral changes and some committed suicide. This was widely grabbed up by

news media and was very misleading. What it said was true--BUT it did not

include the fact that the people were suicidal before starting the drug and some

had other emotional problems that were masked by depression. Time has proven it

to be safe and effective for many. Yet some can not tolerate some side effects

and some are not helped by it.

We must remember that CMT is always progressive and is characterized by

exacerbation and plateaus. It gets worse and then progression may slow down or

even stop for a period of time. Then it may get suddenly worse. If a few of us

got worse after a medication it may or may not be due to the medication.. Those

individuals MAY have gotten worse without it. We are in no position to evaluate

that part. Such a list could well keep people from taking medication that could

help THEM.

IF we had one drug that everyone with CMT that took it got suddenly worse it

would, be indicative of a need for further study, but in a controlled and

scientific manner.

----- Original Message -----

From: Gretchen Glick

egroups

Sent: Tuesday, October 24, 2000 01:10 PM

Subject: [] The Medication List

Thank you Ed and . If the Meds List WAS put together by MDs,(meaning

here MDs that don't have CMT) do you think that WE, the CMTers,

somewhere should have a Meds List put together by US? I feel this would

be more 'experiential' and even more helpful to our sisters and brothers

with CMT. I am thinking of utilizing some of the unused portions of our

site, such as 'files' and 'database' as a place for this. Anyone

else care to second this? Or think this is a good idea? Or bad idea?

Comments, anyone?

Gretchen

eGroups Sponsor

[Guest guest]

Lamar said---that the medical list sounds good but is not feasible and

has no medical accuracy. I totally agree with him.

Gretchen, I know you mean well and want to help, but I truly feel this

might do more harm than good. Lamar also said--. Such a list could well

keep people from taking medication that could help THEM.

We all react so differently, that a person would be totally confused

reading about individual reactions. Please reconsider.

Thank you, Theresa

________________________________________________________________

YOU'RE PAYING TOO MUCH FOR THE INTERNET!

Juno now offers FREE Internet Access!

Try it today - there's no risk! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 24/10/00 08:38:57 PM Pacific Daylight Time,

C1520@... writes:

<< I was thinking that a list of medications that we compile would only

be to explore options that our doctors may not have considered. >>

you made a good point. I was on medicine to stop preterm labor. That

was with Adam. His CMT is very bad. My other children no pre~labor meds have

mild CMT. I am sure it was that medicine. My Dr. said that it might have

been the meds but there is no study to prove it.

jenny

[Guest guest]

In a message dated 25/10/00 03:54:38 PM Pacific Daylight Time,

liliwigg@... writes:

<< C and , good points, I had not even thought of pregnant CMT

women and medication use. ~ Gretchen >>

Yeah neither did I back in 92..

jenny

[Guest guest]

C and , good points, I had not even thought of pregnant CMT

women and medication use. ~ Gretchen