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Old 08-05-2010, 10:11 AM #21
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Good luck Dej!
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Old 08-05-2010, 10:15 AM #22
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Good luck, Dej! If you get scared just picture all of us standing right behind you while you're talking. We'll be there in spirit.
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Old 08-05-2010, 10:18 AM #23
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Let us know how it goes, dear...good luck.
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Old 08-05-2010, 04:04 PM #24
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I was very nervous. The DH sat with me, and we discussed it to death. We didnt know which way we would handle it. We both know we dont want to continue on this med, but have both found this man a "my way or the highway" kinda guy.

Sat in the chair, we talked about this and that for a min, and then he was talking to me about MS stuff and MS meds, and I said "I want to quit Copaxone." I went on to say things like I have tried many times to talk to him in the past, and usually felt like my pleads were unheard or under appreciated. I am tired, I am miserable, and have found the quality of my life STINKS while on the stuff. I went on to admit that I had recently quit on my own, and am a bit afraid to own up to it to him, but I am not a liar, or a manipulator, and just need him to understand how hard the last 3 years have been.

He was quiet. Put up his just a min finger and got my chart. he read, and reread, and read. did uh huh, and hmmm a couple of times. He closed my chart and said "ok. I hear you. You are miserable on Copaxone, and want to quit. yes?" YES! I said almost leaping out of my chair. He held up his just a min finger again and said "you know, if I stop this medicine, I have nothing other than Tysabri to offer you, and you have made it clear that you wont take Tysabri. Is that still the same?" One word answer I said "yes" and he said "do you know what you are risking?" I said "yes, I have researched it to peices, and I understand that without a DMD YOU consider me to be at great risk of relapse, and issues, but I am not willing to continue to live my life feeling miserable and anxious, tired, and wrung out. I AM stopping copaxone, and hope for not only his support, but his continued support, even if it means my choice leads me to disability. he sat quiet for a min and said "ok, then...lets stop the copaxone." DH and I were stunned.

Just like that? I said. Just like that he said.I told him I was expecting an arguement or him to try to talk me out of it again.He said he has recorded six conversations with me about quitting the drug. My sx have clearly increased dramatically in the last year, and I have more than proven my case. I have been taking this med for 3 years, and have done everything he has asked of me.Clearly this med isnt the one for me. He spoke of fingolomoid coming out in the spring. I said WOAH! for now, I just want to be left alone. He said well, want it or not, you HAVE MS. and MS will affect your life.

He asked again if I understood that its his opinion that stopping my meds puts me at a much larger risk of relapse, and disability from relapse. Was I willing to take that risk? Absoltively I said. He said that he would call and cancel my orders for it then. He said he appreciated that I had hung in there for so long on it, and he completely understood what I was saying. That he doesnt have to stick himself everyday with a needle or pay the price of side effects, so he has to go by what I offer in conversation, evidence of due diligence.

I was very pleased! wahoo! He wants to see me in six months. I am glad I told the truth.
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Old 08-05-2010, 04:24 PM #25
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I'm so glad it worked out well for you. Sometimes people surprise us!
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Old 08-05-2010, 05:46 PM #26
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Dej just tell me you have accumulated 1 months worth stashed away "just in case" ? I did that when switched to Ty. I still take 1/2 of one now and then.

Hey we're our own boss when it comes to our MS never forget that. I'd rather make a bad call then someone else.
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Old 08-05-2010, 09:24 PM #27
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I really like that guy! I'm so glad you told the truth and got to see this side of him.
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Old 08-05-2010, 10:09 PM #28
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So happy for you Dej. Hope all works out for you.
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Old 08-06-2010, 06:08 AM #29
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YAY!!!!! I knew you could do it Dej!!!! Your neuro actually sounded human and compassionate saying "it's not me (him) sticking myself with a needle everyday and suffering the side effects". WOW!! That was great. I hope everything continues to go well for you......
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Old 08-06-2010, 06:33 AM #30
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I have 60 days left in the fridge. box are going to stay there for at least 3 months, or until I am positive that this isnt a mistake to walk away. I was assured if I want to go backwards, and restart its just that easy. One phone call and its done.

It was such a relief for this man who always wants to talk AT me, to hear me. Whee! he heard me!
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