Re: Re: Introduction to mscured

[Guest guest]

,

That was such a nice email!

It's sounds like you have a very good attitude, which counts for alot. And it sounds like you know what you're doing as well. The only thing I would comment on is the steroids. I'd try to get off them asap.

Carol

Hello everyone, my name is , I'm 27 years and I've had MS for going on 11yrs. this May. I've been reviewing some of the messages and even writing back to a few people and I felt it was about time that I introduced myself to everyone. I have relapsing-remitting MS and during the course of the 11yrs. I've been on steroids on and off during that time. I don't like taking the steroid medication because I know of the bad side effects but for now it's the only thing that seems to relieve my flare ups.Right now I'm on Avonex, but in the past I have taken Betaseron and Copazone. With the Betaseron I felt that for some reason it wasn't working for me, so I decided to take myself off of the medicaton. My instincts were right because my doctor told me during my next visit to him, that it was good thing that I took myself off from Betaseron because he was going to take my off it anyway. The medication was producing antibodies in my blood system. Copazone wasn't that bad but my doctor decided to place me on Avonex.For now my mission is to find other means of relieving my pains without using steroids. I found that eating a good diet, taking herbal supplements, not taking on too much stress and going to the acupuncturist helpls me a great deal. But for now I would like to say that this is the best group I've ever been in and I hope to talk to as many of you online as possible ( or to just simply answer each others email.) I would like to wish everyone the best of health for this new year and to have a positive attitude with MS because if you let down your guard, the MS could take over your whole life. (Believe me I've been through it.) I hope to talk to as many of you real soon. Keep up the good work everyone.Motto: I have MS, but MS doesn't have me..

[Guest guest]

Hello Carol Hansen, I read your email and yes I do agree that I should get

off the steroids asap, but right now I'm going thru a slight relapse right

now and it seems like the only thing that helps me are the steroids. I

really don't want to take it, but It seems like I have to take it anyway.

Currently, I'm not going to the acupuncturist because of my financial

situation. My medical insurance doesn't cover it, so I have to pay out of

pocket. I find that to be ironic because the one thing that helps me, I can't

get because of my financial situation. But if u have any suggestions,

please write to me and let me know.

My email address is Catsy4u@...

Thank You

[Guest guest]

,

I don't know how much you know about the dangers of steroids, but I wouldn't take them again for ANY reason and certainly not for a SLIGHT relapse. I have primary progressive MS, so I'm always in relapse, I guess you'd say. In other words, I never have a remission - I ALWAYS have symptoms. I have watched people slowly die from steroids, one of whom was my sister. She had to have surgery to have the sac around her internal organs replaced with gortex, because it had turned to swiss cheese from low dose steroids over years. Her skin became so thin, you could hardly touch her without either making her bleed or causing bruises. She kept getting weird infections, because her immunity was so low from steroids. She would not have stayed on them, except that she had a lung disease, (never smoked) and couldn't breathe without them. Did you know they 'blow' your immunity completely for up to 2 years, after having used them for two months? Doctors like to make these decisions for us - they don't want to tell you the repercussions and let you make your own decisions based on that knowledge. I was on them for almost two months for hives. By the time I got off them, I had read more about them and talked to the doctor about them and what I'd learned. He said, "Well we have drugs to help with some of the the problems you get from steroids, like thinning bones etc. We can do bone density tests and see if you need the drug." I decided nothing was worth all that. A bone density test costs about $800.00 and the drugs you take to restore bone density are unknowns, as far as the harm they may do.

I don't mean to alarm you, but you won't get the truth from a doctor or pharmacist. Do some research on the web, if you don't believe me, but don't just take them, because the doctor says it's ok. I KNOW better - I've witnessed the results. You can also ask Betty Iams. Her Mother was on them for MS, just like you, and she just got worse and worse until she was totally incapacitated. Betty hates steroids with a passion, just like me. Anyone who has actually witnessed the devastation, will tell you the same thing. As I said, I don't like alarming you, but you need to know this stuff, so you can make informed decisions about your own health. It's not fair that they have you taking this stuff for minor exacerbations and your not knowing what you could ultimately face from the drug.

I hope I haven't offended you, but this is just as urgent and dramatic as I make it sound.

Carol

Hello Carol Hansen, I read your email and yes I do agree that I should get off the steroids asap, but right now I'm going thru a slight relapse right now and it seems like the only thing that helps me are the steroids. I really don't want to take it, but It seems like I have to take it anyway.Currently, I'm not going to the acupuncturist because of my financial situation. My medical insurance doesn't cover it, so I have to pay out of pocket. I find that to be ironic because the one thing that helps me, I can't get because of my financial situation. But if u have any suggestions, please write to me and let me know.My email address is Catsy4u@...Thank You.

[Guest guest]

Carol,

I thank you so much for the advice and believe me I've been thinking the same

way about steroids. My skin has also became thin over a short amount of time

and so many other things that I 've noticed about my body and it's changes.

I'm glad u told me this because I need to hear the truth about the medication

I'm taking in my body. I know the doctors aren't going to tell me because

it's all about the money for them. I've been doing some research, but the

information I received just told a hand full of what u told me. You can say

that I'm partially informed about the medications that I'm taking. I don't

take what you're saying to me as a scare tactic, you're pretty much waking up

people to what's going on.

Before I go, I would like to know if u can share some information with me and

the rest of the people in on this website. Also, I would like to know that

if I have any questions to ask u, would it be ok to remain in contact with u

to learn some information when that time arrives. Thank u so much.

[Guest guest]

In a message dated 1/5/01 10:33:57 PM Pacific Standard Time, Catsy4u@...

writes:

<<

Before I go, I would like to know if u can share some information with me

and

the rest of the people in on this website. Also, I would like to know that

if I have any questions to ask u, would it be ok to remain in contact with u

to learn some information when that time arrives. Thank u so much.

>>

,

I'm so glad you took my comments in the spirit in which I intended them!

Feel free to contact me any time you want. It makes me feel so good to be of

help to other people. I don't mind 'sticking my neck out' to tell people

what I think, even though sometimes I get it 'cut off'. LOL

Carol

[Guest guest]

Thank you so much. The information that you have given me, either by email

or your website, has been very useful. I will get in contact with you if I

have any questions.

Thank you