RLS conversation, Kathy and Connie

[Guest guest]

In a message dated 6/2/99 1:14:48 AM Eastern Daylight Time, KMTW4825 writes:

<< Subj: ALLOPATHIC,HOMEPATHIC,ALTERNATIVE TX

Date: 6/2/99 1:14:48 AM Eastern Daylight Time

From: KMTW4825

To: MetaMom123

Hi Connie, well I guess you can see from the subject line that I have

something to say about all of this. I was originally going to send this to

the group and then realized maybe it was something I should send to you

personally. If you disagree with that then please feel free to forward it. I

want to say that this is not an attack on you but I did feel it was something

I wanted to say to you.

Kathy, good to hear from you. I'm really glad you wrote. I like knowing

what people are feeling about these things. I do not consider this to be an

attack on me.

First of all, I enjoy and take from all in the group what I can regarding

treatments, whatever they may be. I, for one, use traditional meds as well

as herbs, vitamins, antioxidants, etc. I use them cautiously, I hope, and I

don't use them continuously. I agree that our debate over these treatments

need not be a Hatfield-McCoy argument but I must say that some of what I read

tonight was pretty intense, or maybe I imagined that.

Tonight's

letters didn't seem too bad to me.......I have certainly seen

worse......lol........but people do have strong feelings.

Connie I have always

known, as you have made it clear, your feelings about our traditional med

system. I want to add my 2 cents worth here, albeit it may be repetitive.

I'm not sure. I feel when I read what you have to say Connie that you're not

really all that flexible about alternative treatments. Your comments the

other night about our western medicine being the best bar none certainly

spoke volumes to me of your feelings about this. Your comment of where do we

go when we've broken a leg or need surgery, etc. are true but under the

circumstances and the age we live in we really have no choice.

Of course we have no

choice. That is just my point. And believe me, you don't want a choice when

it's this serious! Nothing else has been proven as much as traditional

medicine for the real serious stuff. I know there are so many doctors out

there who think they are God......really a--holes, if you'll pardon my

French.....so worried about the time and the money. But there are also many

kind, dear dedicated people in traditional medicine, people who will listen

to you and try to help. You have to take the time to find them.......ask

everyone you know and meet.......I do that all the time. You can run into

just as many know-it-alls in alternative medicine. If you really delve into

complicated science, you will find it unbelievable the strides that modern

medicine has made.

I am taking small doses of Mirapex, Neurontin, Klonopin, Tyl #3 and although

I think maybe I'm sleeping better I can say very definitely that no herb or

vitamin, etc. has ever made me feel as badly as these meds but I am not sure

that my alternative treatments/meds, (don't know proper wording for these do)

and I definetely am thinking the " small relief " afforded me by these meds is

not worth it. I am agonizing over what to do about this and am working up to

what I will say when I see my Neuro in July. I want to come off all of these

meds as I feel that my personality has changed since I've been on them.

Really! I thought for a while that my pain was causing my sudden outbursts

of anger, my irritability and inability to deal with stress in a much more

negative way than I can ever remember and I can date these behaviors back to

my meds. When I discussed these with my Neuro in March he really did not pay

much attention because he had not heard of this before!

I don't blame you

one bit for wanting off the meds. I did myself, and I am off the Klonopin

and Neurontin. Very slowly and very carefully. I still take the codeine

tho, because I think I might shoot myself if I didn't have that. Yes, the

Klon can definitely change your personality. said he got so " angry "

on that. I hate the side effects, too......but the darned supplements and

vitamins do nothing for me! I take so many of them and I can't really see

anything. I have tried acupuncture, magnets......every supplement there is,

I think......and then I say.......no more meds at all. This is it. But in

the middle of the night when I am sitting here crying and my body is shaking

and I also have tremendous arthritic pain......I reach for the bottle. I hurt

so bad most days, I can hardly walk across the room. It's very hard for me

to get through the days anymore. I don't take codeine for pain during the

day. I only take it when I have a bad RLS attack at night. I grit my teeth

and bear it otherwise. I have to be careful about the constipation.....that

can make you miserable. But I don't let it go on for very long. I make sure

I go to the bathroom one way or another and try to eat lots of fruit, veggies

and fiber.....plus take a stool softener and fiber drink. Are we having fun

yet?

I will in all

honesty say that I have been burned and mis-treated greatly in my lifetime by

doctors until I learned how to take care of myself and find the best treaters

for me. That was a lot of work, but nonetheless I still find it hard to

trust our traditional medical system. I think that unfortunately our medical

system has become a huge for profit business and it is very difficult to find

the treatments we need, in this case for my RLS. I do remember telling the

group about my abnormal liver functions a while back and I have 3 other liver

function tests since then w/ q other one being normal. This last one was

also. My PCP thinks it is the meds and, I'm blanking here, senior moment

), I think she said that the Neurontin as well as the Tyl can do this. I

have not sought another opinion about this yet as I am satisfied with they

way she is handling this. Another disconcerting test result is my high

cholesterol levels. Again, we don't know where this is coming from and it

may just be my body producing this and I need to stay a much stricter diet to

lower this, but she feels that it again could be the meds since all my tests

were normal before these.

Sorry, I can't

imagine that your meds are causing the rise in cholesterol.....although I

have been told that stress can raise it. I'm trying to learn to meditate and

relax more. Seems like good thing to do for many reasons. And of course,

you need to analyze how you are eating. Sometimes these problems run in

families, no matter how well you eat.

We are looking at the

original lab work done by my neuro when I first saw him a year ago to use as

a baseline. I wasn't on any meds at that time and so that might be helpful.

Anyway, I'm sorry this took so long. I'm also writing this at 1 AM and

probably should be sharing this part w/the group since it has been an awful

day and my pain and RLS have been really talking back to me this evening.

First time in a long time. Ready to scream about now.

Hey, it's 2:30

am here and I have been up for an hour, ready to scream myself. Let know

when you are ready and we can have a duet.

Well, anyway I hope by the

time you have read this you had a good nights sleep and enjoy a nice day.

Weather here horrendous, hot, humid and hazy!

Hot, hazy, humid here

also......which only added to my misery outside. Thank the Lord for Air

Conditioning! I have taken some codeine so I will be able to sleep now. I

need to see my neurologist again soon, too. I was debating taking Mirapex.

I just don't know what to do. One part of me says, just get up and walk and

deal with it.....but the other side remembers how it was when the meds were

working, and how nice it would be if that could happen again. I think this

letter might be something that some in the group might be interested in

reading, so I am sending it along to share.

Take care,

Kathy/Cambridge. >>

and Connie, 63, MD