Officially diagnosed

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Officially diagnosed

Postby OneEyeBlind » Fri Jul 23, 2004 2:36 pm

Well I have just graduated from Probable MS to RRMS. I don't think this has all hit me yet. I mean for the past year I've been trying to be optimistic. Right now I am numb.

I thought I was prepared for this day but it 's still a shock.

I will be starting on Meds as a part of a study.
Betaseron vs. Copaxone I don't know when yet. They will be calling me on Monday to set it up.

If anyone has any advise on meds PLEASE let me know.

Thanks, Karen (OneEyeBlind) :wink:
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Postby mscaregiver » Fri Jul 23, 2004 4:24 pm

Hi Karen, although a day to be confused and with lots of doubts about things, now you have something to focus on and decide your plan to help yourself deal with the problem, although not something anyone wants to actually have to deal with, at least the worry of "what is this" is now most likely over..

What study are you going to be involved in?

Please look this forum over very closely, read about what others have done and what others are doing to help themselves with their MS.

Noone here can prescibe a treatment for you, but they can tell you what has helped them, and that may be the best prescription to be found.

You will find the folks here ready to talk with you about your situation and do all they can to help you.

Just realise today you are where many many others have been and have moved forward from, as you will..

take care and please read the many threads here for lots of good information..

Philip
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Postby lynn45 » Fri Jul 23, 2004 4:29 pm

Karen,
I was diagnosed two years ago and while I was glad to get answers, the answers I got were not what I wanted to hear, so I pretty much ignored it at first. I came to grips with the reality of it when I started on the meds. I take rebif. That was my rude awakening. Do you have a good neurololgist that you trust and has experience with ms? I think that is a key factor in all of this. Also, there is a ton of information out there on the web that can educate you. I try to stay current with everything I can find. This website has a lot of great links that can give you information as well as encouragement and sometimes even a few laughs. Hang in there, when you first find out there are so many questions, who do I tell? what drugs, if any do I take?, etc etc. There are resources there to help you figure a lot of that out. In the meantime, live your life and get the most out of it. Try not to let this sideline you. Take care and know there are a lot of us out here that understand what you are dealing with. It will get better.
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Postby OneEyeBlind » Sat Jul 24, 2004 9:38 pm

Thank you for the replies and encourging words. I am feeling better today. It's all had time to sink in. I don't know if I am going to participate in the study. I was told that I was a good candidate for it because I am new and thus far untreated. I wonder if it will be more hassle than its worth. Lots of things to think about.

Anyway the real question I meant to ask was besides the advise they give you about icing the area before injecting or taking a pain reliever before, is there anything else I should try or be aware of that may make the whole process more pleasant?

I do like my Dr. He is an MS Specialist in a University Hospital (hence the study) and we are comfortable with him. I know my doctor can advise me on some of this stuff but lets face it, he has not been there and done that so I figure who better to ask then real experts, my fellow MS'rs who really have been there and done that.

I would appreciate any input. If I am going to do this I might as well tru to do it right the first time.

Thank you!
:wink:
Karen (OneEyeBlind) :wink:

* I don't suffer from insanity, I enjoy it!
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Tips on taking meds

Postby art » Sun Jul 25, 2004 5:08 am

I used to be on Avonex and am now on Copaxone. Here's a few good tips I found for each (I'm assuming the Avonex tips will work for betaseron):

For Avonex the drug that completely wiped out the flu-like symptoms for me was Naprosyn (a buffered form of Naproxen). I'd take one at shot time (7pm for me) and one at bedtime (11pm) and wake up forgetting I did my shot the night before. Some people have stomach upset with the Naproxen and Avonex was only once a week, so be aware of that, but it surely made my life much better.

For Copaxone, a tip I got from another MSer when I started was to do the shot in the morning as part of getting ready. When you were done giving your shot, load up the autoject with the next day's payload so you can just do the shot without thinking about it the next day.

I came up with the following system to remember where to do my injections (having to rotate each day makes it difficult for me to remember): I made a set of cards that listed each site. I keep the cards with my other injection materials. I take the cards out and do my injection at the site at the top of the pack. Then I put that card at the back so the next day I do the next site, etc.

One other thing you might find useful is a booklet that my organization just put out in PDF form for newly diagnosed people and their families:
http://www.bostoncure.org/downloads/bcp-ms-whatsnext.pdf
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Postby Shayk » Sun Jul 25, 2004 8:28 pm

Karen

Everyone's given you great advice already in what less than a year into it I can only describe as a "trip". I thought I'd "nail" if you will the treatment (i.e. which CRAB drug) and then quickly add some finishing touches for "best management". I'm still working on it. :roll:

I also heartily endorse listening to other MSers. Once I'd heard about estriol, I actually got even more attached to it when I read an interview of Voskuhl asking why she'd decided to pursue this "novel" treatment. Her response, "I listened to what my patients were telling me."

Besides listening to other MSers, I'd add listen to yourself and whatever you think your body may be telling you individually about the best course to pursue. Especially after you've had a chance to learn more about MS. As someone advised me, read, read, and read some more. I'm still reading... :)

A sense of humor helps a lot , especially with others who usually don't quite know what to say.

And, keep right on living and doing things. Anything you can do to avoid or decrease stress is a really good thing in my opinion. :)

Do take care and keep us posted.

Sharon
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