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Old 04-14-2008, 01:54 PM #381
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Hi Carrie-
Nice to see you here - sorry you have a relapse going on. Mike was talking about another get together, but things have been busy here getting the house put together for sale. Hope to see you again soon!

Hi Bill!
Nice to see you here too!
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Old 04-22-2008, 03:39 PM #382
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Hi everyone, I'm Carisa. I was just officially diagnosed last week, but have been trying to figure it all out for the last 5 months. It started with weakness and tingling in my hands, and I finally had an MRI and spinal tap in early April. They're telling me that I have about 30 lesions in my brain but none in my spinal cord and no "bands" in my spinal fluid. Because I've had two "CIS" episodes, they've given me a diagnosis of RRMS. Now my neuro is wanting me to get on the disease modifying drugs, but hasn't provided much guidance as far as the differences between the drugs. Basically, he handed me armloads of drug company generated binders and told me to do my own research. (I know - I'm currently looking for a new neuro.) So, after doing all my own research, I'm finding myself waffling between Avonex and Copaxone. But, I can't seem to tell if there is a big difference between the effectiveness of the two drugs... it seems to me that if they're both just as effective (around 30%), I'd rather take the one that doesn't make me sick. Does anyone have any insight for me? Thank you!!!!
p.s. I'm so glad to have found a place to talk to others with MS!
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Old 04-22-2008, 05:15 PM #383
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Carisa,

I have only used two MS medications: Avonex and Tysabri.

I used Avonex for over 6 years and was not sure if was working until I realized two things: (1) I had only two minor exacerbations in 6 years, and: 2) when I stopped for 5 weeks to switch to Tysabri, the syptoms from years ago all showed-up at once (i.e. Avonex must have been working).

Welcome to the site. I hope that we can help you through this process, s feel free to ask anything.

-Vic
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Old 04-22-2008, 05:38 PM #384
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Hello everyone. I'm a newbie here and trying to become acquainted with the site. I was diagnosed with RRMS almost 14 years ago. I'm also letting the Swank MS diet into my life. It's good to be here.
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Old 04-22-2008, 06:39 PM #385
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Quote:
Originally Posted by Rissa_TX View Post
Now my neuro is wanting me to get on the disease modifying drugs, but hasn't provided much guidance as far as the differences between the drugs. Basically, he handed me armloads of drug company generated binders and told me to do my own research. (I know - I'm currently looking for a new neuro.)
Hello Carisa and welcome to NeuroTalk

It's really not unusual to be given information about the disease modifying drugs (DMDs) and you, the patient, making the choice of which one to use. Some neuros will have a preference but in the end it's still your choice. I know it sounds strange but that's just how it works

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Originally Posted by amyb View Post
Hello everyone. I'm a newbie here and trying to become acquainted with the site. I was diagnosed with RRMS almost 14 years ago. I'm also letting the Swank MS diet into my life. It's good to be here.
Hello, Amy and welcome to NeuroTalk

You will find several of us who have had this disease a long time and there are members who use the Swank diet.
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Old 04-22-2008, 06:54 PM #386
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Quote:
Originally Posted by Rissa_TX View Post
Hi everyone, I'm Carisa. I was just officially diagnosed last week, but have been trying to figure it all out for the last 5 months. It started with weakness and tingling in my hands, and I finally had an MRI and spinal tap in early April. They're telling me that I have about 30 lesions in my brain but none in my spinal cord and no "bands" in my spinal fluid. Because I've had two "CIS" episodes, they've given me a diagnosis of RRMS. Now my neuro is wanting me to get on the disease modifying drugs, but hasn't provided much guidance as far as the differences between the drugs. Basically, he handed me armloads of drug company generated binders and told me to do my own research. (I know - I'm currently looking for a new neuro.) So, after doing all my own research, I'm finding myself waffling between Avonex and Copaxone. But, I can't seem to tell if there is a big difference between the effectiveness of the two drugs... it seems to me that if they're both just as effective (around 30%), I'd rather take the one that doesn't make me sick. Does anyone have any insight for me? Thank you!!!!
p.s. I'm so glad to have found a place to talk to others with MS!

Hi Carisa
Welcome to NT. Sorry about your dx, but you're in a good place now. I've tried Avx and copax. The A lasted 6 months, and I had a fever for 4 of the 7 days between injesctions. Needless to say, I stopped.

I was on C for a couple years, no s/e other then injection site stuff and necrosis of the backs of my arms, hips and legs. I was taking Imuran also. So my doc took me off the C and kept me on I. Several years later I'm still on Imuran and just started Namenda (anti-alzheimer med) last week.


Looking forward to more posts and getting to know you.

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Old 04-22-2008, 06:56 PM #387
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Quote:
Originally Posted by amyb View Post
Hello everyone. I'm a newbie here and trying to become acquainted with the site. I was diagnosed with RRMS almost 14 years ago. I'm also letting the Swank MS diet into my life. It's good to be here.
Hi Amy
Welcome to the club. I'd be interested in your take on the Swank diet. I recently started reading The MS Recovery Diet which has some basis in the SD, and other stuff.

See you on the boards.

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Old 04-22-2008, 07:08 PM #388
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Welcome to Neurotalk, Carissa and Amy. So nice to meet you both. Come on in and join your new Family.
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Old 04-23-2008, 10:58 AM #389
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I appreciate the warm welcome from all of you. I can see that there is a wealth of information to pick up from those who have much more experience with MS than myself. Now you've got me interested in the diets...
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Old 04-23-2008, 08:01 PM #390
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Hi there Carisa! Another with RRMS here, and I wanted to welcome you to NeuroTalk.

Have a look around the forum, and don't neglect "The Stumble Inn" where we get together for some fun and relaxation. I'm sure it won't be long before you feel like a member of our "family".

I also wanted to mention to you about not getting too scared about the number of lesions on your MRI. I'm hoping that your neuro has told you that numbers of lesions has nothing to do with severity of the disease.

Anyway, welcome again Carisa. It's lovely to meet you.

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