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Old 08-04-2010, 07:41 AM #1
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Default Should I lie?

June 25 I went off my copaxone, after years of telling the MDs that I am suffering on it. Each and every time I spoke to them about it, they showed little to no sympathy. They take a hard line of "you MUST be on something!" They have gone as far as to scare my husband. they wanted to convince him that if I laid down my needles, within months I would be crippled, in a WC, or need full time help. Wanted to sing the praises of what this med does for me, and if I insist on coming off of it, I would have to pick another med to be on like Rebif or Avonex, even tho interferons made my LFTs rise to a point that I set a clinic record.

Since this MD isnt hearing me, listening to me, and is only going to become outraged that I am ignoring his advice, should I continue to keep up my "trial"off the meds, and just not tell him what I am doing? I normally dont advocate this behavior. As a matter of fact my primary and local neuro both know that I have stopped, and I have their blessing, but I dont want to burn the bridge at the big girl hospital, and I dont want to be labeled as unco operative.

What should I do?
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Old 08-04-2010, 08:07 AM #2
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let me add that I believe this MS MD to be temporary. I believe he is being romanced to a NYC hospital. I dont believe he will stay in this place, and they may replace him with someone more reasonable. its a "my way, or the highway" kinda guy.

I am normally quite good at standing up for myself, but occassionally I run into someone I just cant/wont confront. This man is one of them. It doesnt matter how eloquent your arguement nor your rationale, he has feet of cement and wants you to know that he doesnt need to understand you, its YOU that needs to hear him.

Its so much easier just to go sit in his chair, and say Yep, all is well...thank you. have a nice day, and move on. In the next few months I am expecting him to be replaced. its the far away hospital, and....

why is this so hard? what is it about that man that makes me wanna just shut up? he is aggressive, and pushy. He is brilliant, but his bedside manner is scary!
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Old 08-04-2010, 08:54 AM #3
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Do you have to keep your appointment with him? If it were me, I'd just cancel it and tell them I'll call back when I know I can make it.

I hate confrontations, too.
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Old 08-04-2010, 09:23 AM #4
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I might cancel to avoid any stupid, useless confrontation. Ask yourself, is there anything for you to gain by going or is it just a lose of time and energy (Of course I'm very anti-doctor now, so consider that)
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Old 08-04-2010, 10:57 AM #5
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i say cancel the appointment.
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Old 08-04-2010, 11:37 AM #6
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Why do these doctors think they're the ultimate and last word? Seriously, they really do have an air of superiority about them that is really annoying. Yes, I know they went to school and everything........that doesn't make them the end all know all.

They'll never admit it but they just don't know everything about MS and how if effects people. Everyone with MS is different. Those who respond well to the DMD's are fortunate. Those who don't do better without the meds. Why can't they just admit it?

Oh yeah........."nothing" doesn't pad their pockets.
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Old 08-04-2010, 11:46 AM #7
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IMO lies eventually catch up to you...I'd suggest either cancelling or telling him you are the consumer of health care, and you have final say...I'm a wet noodle too...easier to tell you what to do than do it myself
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Old 08-04-2010, 11:54 AM #8
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I have cancelled 3 times now. The office called back and said I really needed to keep this appointment with the man. I asked if I could see the PA instead, and was told no, since its my yearly check up it must be with the MD.

I am an honest girl. I think i will just sit down and tell him the truth. It will help to have my DH on my side this time.The last few times I spoke about stopping the drugs, he would always use scare tactics on my DH and explain to him how important it is to just keep shooting. How dangerous it was for me to walk away. I was risking a WC...So, each and every time the DH would end up being scared, saying "he is the MD,he must know what he is talking about." and then ask me to please keep taking the meds. This time DH has seen the changes and is pleased with my progress OFF the meds.

I just have to screw up my courage and spit it out.
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Old 08-04-2010, 11:57 AM #9
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I took myself off DMDs 4 years ago after being on Avonex for 4 years (tired of side affects) and a few months of Copaxone (horrible side affects also).My neuro changed his whole attitude toward me when I refused to "try" another med..I haven't been back to neuro in 4 yrs.Whats the point? My PCP treats my symptoms. I feel better off the DMDs and I have not had any exaserbations, so why put my body through the stress of taking a med. that may or may not help.
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Old 08-04-2010, 12:27 PM #10
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When I quit taking C last summer, I told my neuro that I'd stopped, and he was like..."oh...Okay. Why?". I told him why (he'd said something about how he didnt think the injectible drugs work to me a few months before) and he said that was fine with him....probably because he didnt think they worked anyways.

He still wont give me LDN tho...he was totally willing to give me a stabby drug that he didnt believe in, but wont give me a pill that he doesnt believe in. Dont understand that.

He did say that if I could find someone who'd Rx LDN he was ok with that. He just wasnt going to be the one to Rx it to me.
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