Diagnosis Is In

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby LoveActually » Sun Nov 01, 2009 12:57 pm

Thank you BBen, same to you, sorry about the diagnosis.

I've decided on Copaxone only because it doesn't involve flu-like symptoms as the side effects. But almost every moment of the day since making that decision, I wonder if I'm making the right one.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby scoobyjude » Sun Nov 01, 2009 2:30 pm

LA, I picked Rebif because I read that was what Teri Garr was taking. Real scientific right? At that time I hadn't done even half the research you have already done before your dx. We all worry if we've made the right choice. The only thing that comforts me is that I know that better things than anything we currently have on the market will be coming out soon. I am waiting for them. I think whether the others 'work' depends more on your personal disease course. You have a lot on your mind right now but you're a very informed person. Don't second-guess your decisions because it will only drive you crazy.
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Re: Diagnosis Is In

Postby NHE » Sun Nov 01, 2009 3:27 pm

Regarding choices, I was also given a bunch of informational pamphlets on the three different ABC drugs that were available at the time I was diagnosed. However, I found that the best information that really helped me with the decision making process was in the Doctor's Prescribing Information pamphlets. Every drug approved by the FDA has this information available. It is usually loaded with medical terms so I used a medical dictionary to help me get through it. After this process, I knew more about the medications than my neurologist did. In retrospect, after 9 years, I'm still comfortable with the decision that I made at that time. Understanding the Doctor's Prescribing Information will go a long way to helping anyone make a medication decision. Regarding the glossy pamphlets, look them over, but the real data tends to get lost in the marketing hype.

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Postby Absentee » Sun Nov 01, 2009 5:41 pm

hey there
well I am sorry it was this diagnosis (rather than what, I don't know) but I am happy for you that the limbo period is over. I spent so many years in fear of this diagnosis. In fact I spent so long and I ignored what was happening to my body to my own peril. You will be fine and even on the days when you aren't you will still be fine.

I too did the Copax for the same reason. Maybe it was the pictures of the guy jogging?! I can give lots of advice if you want any. It takes getting used to, but is not terrible.
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Re: Diagnosis Is In

Postby Just_Me » Sun Nov 01, 2009 8:26 pm

I'm sorry but I'm glad you were able to get a dx and can move on.

LoveActually wrote:... was given 4 huge binders full of info for each CRAB drug...

This is what I am dreading. I don't want to have to be my own doctor! I want somebody to tell me what I should be doing, not have to figure it out myself! I know that is a completely wrong attitude but its the way I feel.
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Postby LoveActually » Sun Nov 01, 2009 9:33 pm

scoobyjude,

You are so right when you said...

Don't second-guess your decisions because it will only drive you crazy.


I haven't been myself since Thursday, those meds will be hitting my doorstep soon and I'm not sure what I'm gonna do when they get here. The nurse has already called me and said, "When you get the autojet and your medication, contact me and I'll be right over". I have a fear of bursting into tears when she gets here because by then, it'll be even more real. I feel for that lady, she's gonna have her work cut out for her dealing with me. LOL!

NHE,

Thanks for the info about the Doctor's Prescribing Information pamphlets.

Absentee,

I've been reading the Copaxone thread here and have learned a lot from them. I'm sure I'll have more questions when I start so I'll keep you in mind.

Just_Me

When my Doc told me about the meds, I told him that I was already leaning towards Copaxone. He then said, "The majority of my patients have gone that route and I think that's what would be best for you". I think most neuros try to be impartial when it comes to the meds.

Like I said, my decision was solely based on the flu symptoms thing. I'd rather poke myself every day then have (possible) flu-like symptoms every few days. I'm not a very nice person when I'm sick. Or hungry. LOL!

Fingers crossed that you won't have to make that decision.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby pager » Mon Nov 02, 2009 11:13 am

LA, you have made the best choice for you and you know, you can always change meds in the future. In June, I too was right where you are now and please feel free to post for support or email me off line. Like you, I had so many symptoms and didn't know what was wrong. It is hard when you are the Mom of young children and supposed to be strong and yet, you don't feel so strong.

Everyone tells you that the Copxone shots get better, and yes, I can now say that they do. (Started June 2009) For me it took about four months to not have the very uncomfortable side effects. They still are there but SO MUCH more manageable. My shot nurse recommended manual injection, but my preference is the autoject; I want to be able to do it when my husband wasn't home and able to assist in the hard to reach areas. During that time, I experimented with hot, then cold, cold and then cold, then hot and hot and have finally settled on a warm shower to clean and warm up my body, then the injection and then cold compress for no more that several minutes. (In the beginning, the ice packs were on for sometimes as long as 30 minutes.) Reading everyone else's advice and methods finally lead me to one that works for me.

I wish you the best and will be thinking of you each night when I give my shot. I wish you strength and let the tears fall when you need to....we all do!
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Postby LoveActually » Mon Nov 02, 2009 12:38 pm

Ok, I'm assuming these things are gonna hurt. Why? Why do some shots hurt? Is it the needle, is it the drug, is it the person administering it?

I've read that it's less painful to self inject but I will pass out before the needle makes contact with my skin. I just can't look at that. So I too, am going with the autoject.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Needled » Mon Nov 02, 2009 1:08 pm

LA, They really don't hurt that much, but every once in a while you just hit something wrong, I guess. I have absolutely no idea why sometimes you feel it more than others but then sometimes you don't feel a thing and have to check to make sure it's done. There is absolutely no rhyme or reason that I've been able to figure out. All I can say is God Bless The Autoject, cuz I couldn't do without it.
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Postby Loobie » Mon Nov 02, 2009 1:40 pm

You should do Avonex first where you have to bury the 1 1/4" needle all the way to the hilt. Then sub q injections don't seem so bad!
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Postby LoveActually » Mon Nov 02, 2009 1:44 pm

LMAO!

Oh my goodness Lew! I can't stop rubbing my arm, the imaginary pain is killing me.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Sawdoggie » Mon Nov 02, 2009 2:16 pm

The first time you inject yourself it is a little bizzare to say the least as it goes against any preconcieved notion of something you should do to yourself. It quickly becomes much more normal and routine, though still not something to look forward to every day or every other day. I started beta last May and was lucky and had no real side effects from it as far as I could tell (Bayer could be selling me a placebo for all I know). It was not nearly as bad as some of the stories that I had read online and had tried to prepare myself for.
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Postby Loobie » Mon Nov 02, 2009 3:03 pm

LoveActually wrote:LMAO!

Oh my goodness Lew! I can't stop rubbing my arm, the imaginary pain is killing me.


Since it was once a week, I alternated thighs! Then my wife started nursing school and it was alternating cheeks! You'll get used to it, believe me you will.
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Postby LR1234 » Mon Nov 02, 2009 3:36 pm

I still have the copaxone in the fridge (been there for a couple of months) haven't had the guts to start using it yet and I keep trying to convince myself that I don't need it. mmmmmm denial I know
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Postby LoveActually » Mon Nov 02, 2009 4:50 pm

LR,

Wanna start together?

I read somewhere that it feels better if you take the dose out of the fridge a few hours before you administer. True?
Last edited by LoveActually on Mon Nov 02, 2009 4:52 pm, edited 1 time in total.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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