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New too :/ Betaferon

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Old 07-11-2008, 02:27 AM   #1
Penelope 11
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New too :/ Betaferon

Don't really what to say but hi. I was diagnosed the beginning of last month and still trying to just find out as much as I can about something I really wasn't expecting. Docs always said its stress or an allergic reaction to something. The closest to related symtoms to MS I heard was suspected Guillian Barre Syndrome. Thankfully after the LP and MRI we now know what the problem has been for the past few years, but somehow I suppose it still hasn't really become reality. Going onto Betaferon soon, and just not sure what to expect. The nurse will phone next week so we can start making arrangements for her to start showing me how to use it and just making notes constantly on everything I have to ask. The last time I saw the Neuro, was when she told me and was just to shocked to ask anything. So that's yet another thing I have to do, is go back to see her.

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Old 07-11-2008, 05:30 AM   #2
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Re: New too :/ Betaferon

Welcome to the family
RRMS Dx 03/08

Old 07-11-2008, 05:49 AM   #3
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Re: New too :/ Betaferon

HI Penelope. It is scary finding out you have MS, isnt it? I am truly sorry that you had to wind up here, on this board, for that reason; however GOOD NEWS! You have come to the right place! Here, you will find more support, more people to answer your questions, sympathize with you, direct you and give you advice than you ever dreamed possible! This is a great place to find- and we are happy to have you!

Starting Betaseron is also a big step. Im on Rebif, which is a very similar drug...why Betaseron? Any particular reason why that drug was choosen over the other possiblities? Youll hear people talk about CRABS or Disease Modifying Drugs here- those are the four MS drugs-
C Copaxone
R Rebif
A Avonex
B Betaseron
And now, Tysabri is also used...but this is a much stronger, intervenous drug as opposed to a shot.

The nurses from these places are great. Theyll help you get started and be there with you on your journey to finding out if this is going to make a differnce in your world...we also have people on the board who use Beta- so shout out with specific questions once you have them! Beta isnt so different from Avonex or Rebif, they are all intereferons, even if they are slightly different in the type of interferon (a vs. b) So feel free to ask any and all questions here...

Welcome to our cyber family...
RRMS- dx 05

Old 07-11-2008, 08:10 AM   #4
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Re: New too :/ Betaferon

Hi, Penelope. I was where you are a mere 15 months ago. MS wasn't on my radar at all. And then, I quickly discovered that while I thought I knew what MS was, I knew close to nothing!

I have a question for you! How did they test for (and rule out) Guillain-Barre?

Last edited by Bearygood; 07-11-2008 at 08:10 AM.

Old 07-11-2008, 04:04 PM   #5
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Re: New too :/ Betaferon

Welcome to the family. I'm sorry you have MS but you're in a good place for learning about it and venting about it. I was diagnosed last September, and like you, I was so shocked that I didn't ask much either--my PCP diagnosed me and sent me to an MS doctor to confirm. I barely remember those appointments. It gets much easier once you've had some time to let it sink in a little bit.

It's also easier (for me) to ask here, rather than ask my doctor, and I'd rather hear it from people who have MS first rather than doctors on most matters. Then when I see my doctor, I know what to ask. I have an appt with my MS doc in a few weeks, and I haven't seen him since he diagnosed me; I deal with his nurse. I'm going to have the input and wisdom from what I've learned here to help me.

We're glad to have you here!
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

Old 07-11-2008, 04:43 PM   #6
glamour girl
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Re: New too :/ Betaferon

;wave; Hi Penelope and welcome aboard.
I was dx 8 years ago and knew nothing. I've learnt so much from these boards. Hearing it straight from everyone here. I'm sure you will have heapds of questions. Someone will always be here to help out.
Might be a good idea to write out any questions you have for yr doctors. That way when you get to see her again. You'll remember what to ask.
Glad you jumpew on. Once again Welcome.

Old 07-12-2008, 09:39 AM   #7
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hotflash HB User
Re: New too :/ Betaferon

Welcome aboard, you will find no matter how much or how little you visit someone will always be here to help.


Old 07-12-2008, 12:56 PM   #8
Join Date: Apr 2005
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dawnies HB User
Re: New too :/ Betaferon

Hi Penelope, I inject Betaferon and it really isnt as bad as you think it is going to be. I have been injecting it for just over 4 years now and have,nt had a relapse since starting it so i think it helps but the truth is you never really know but do anything you can to help. I had flu like symptons at the start but that only lasted about 5 or 6 weeks then its fine and its amazing how quickly it becomes part of your everyday life. You will be fine, Good Luck.

Old 07-13-2008, 11:09 PM   #9
Penelope 11
Join Date: Jul 2008
Location: Johannesburg, South Africa
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Penelope 11 HB User
Re: New too :/ Betaferon

Hi again and thanks.

When the doctor thought it was GB he was planning to do an LP and get a neurologist to see me, but then while I was in hospital the numbness started to go away, so he decided 'that' wasn't it and just put it down to an allergic reaction. Wonder now that if he did just go ahead with his plans we could have found out 5 years ago already.

Thanx again for all the replies


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