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Old 08-06-2010, 09:00 AM #31
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Congratulations

I imagine you also made a difference in his growth and understanding as a doctor who trats people (and not just diseases that have a body attached to them)

Now go live your life your way!
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Old 08-06-2010, 10:54 AM #32
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Quote:
Originally Posted by Dejibo View Post
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!
To your credit it sounded like you made it clear you did your homework and presented your side in an intelligent, matter of fact way. It has been my experience, on both sides of the exam table, that becoming too emotional can sabatoge the patient's credibility.

The "this is my body", "I'm the one paying you" and the ever unpopular "I'm not going to be your guinea pig" although tempting to say sometimes really don't benefit the patient when attempting a rational discussion, imo.

Your approach will most definitely shape his interactions with other patients and for that we all thank you, Dej!
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Old 08-06-2010, 02:02 PM #33
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Thank you for all the support and encouragement. I really did feel it to be silly to have to lie to a man I pay so handsomely. Its just that some MDs are tough to talk to about the weather, let alone your brain. He said that I had proven my case to him thru the past year with documentation, and persistance. I was not just stepping up with a bad day asking to quit. I made a well reasoned arguement, and had my facts, and figures ready to back it up.

I do hope this helps him grow as an MD and be more willing to listen the next time someone says they are miserable on the stuff.
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Old 08-06-2010, 02:08 PM #34
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Glad to hear your appointment went well, Dej. Suggestion: write him a personal note thanking him for his care and compassion...my neuro loves it when I write him notes...
again, congrats... and give your special guy a hug for supporting you!!
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Old 08-09-2010, 05:38 PM #35
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Good job, Deb. I'm proud of you and happy for you. What a weight lifted from your shoulders...
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Old 08-09-2010, 06:25 PM #36
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I'm glad it went smoothly for you Dej.

I too am medication free, although my neuro did try talking me into going back one of them last time I visited. He tried the guilt trip with me, and said that the only thing he could offer me would be chemo if I wouldn't try a DMD again, but the Betaferons made me ill and I'm allergic to Copaxone.

I don't consider I'm any worse for not medicating, maybe no better either, but I made my decision years ago and I remain happy that I took control and didn't allow some-one else to do it for me.

One close friend has also given away all of her medications, except for her vitamins. She'd tried the ABCs and she'd been given chemo, but she was feeling ill all the time. She was in pain, her mobility was poor and she was becoming depressed, so she made the decision to go without and see what happened.

Almost immediately she felt better, and two years later her improvement continues. She no longer uses a cane and she no longer needs the Neurontin she was taking for nerve pain.

I know others among us are happy to continue because they work for them, or they hope they work, and I'm in no way suggesting that you too toss away your medications. I just wanted to say that I did, and I know some-one else who did, and I wanted to support you Dej in your decision to do the same.
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Old 08-09-2010, 06:30 PM #37
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Way to go Dej.

When I want to stop a med I just fax the MD the information and about why.

Or if I have an appointment I said I stopped Copaxone or Neurontin, etc. I was surprised when the last Neuro said "Good". I was afraid of what he would say but he shocked me instead. I didn't even need to explain myself.

Being a big MS specialist/researcher I thought he would fight me. I explained after the check up why I stopped. That was in around 2005.

I went without any DMD's and some other symptoms meds I had tried or had been on for years, and then went on LDN in 2008. So tired of all the meds they wanted me to try.

During that time if I needed steroids that's what I used. I had my worse relapse "ever" when I was on "C", besides the other awful problems it gave me. I always tell the truth, as I know it, or remember it.
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Old 08-10-2010, 04:01 PM #38
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Way to go, Dej! I'm bursting with pride, and I'm so happy he was able to listen and understand.
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Old 08-14-2010, 08:12 PM #39
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Red face What is LFT?

I don't know what LFT is, a response to Interferon.

I may have to take Interferon A for Polycythemia Vera, another disease I
have (high platelets, high red cells, in other words thick blood). I never
took any MS drugs, knowing I was drug sensitive. I may HAVE to take the
Interferon A, however. Or risk stroke.

It's getting harder being older. Now I've had several dx's: MS, Porphyria,
Polycythemia Vera. Too much.
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Old 08-15-2010, 07:01 AM #40
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An LFT is a Liver Function Test. Interferons can cause them to go sideways. I was one that it went wild on. its why they normally test every 3 months when you are on the stuff.
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