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Old 04-10-2010, 10:28 PM #1
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Default Do You All Question your Neuro's advice?

I was in contact with an acquaintance who has had MS for 14 years and has been on "an alternative therapy". She seems great.
I've agreed to go on to a clinical trial in June. I have some worries about it. Especially when she said she was on alternative therapy...
do all of you get confused by what your neuro recommends?
I feel as if I'm in a sea of molasses...trying to figure out the best course for me...
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Old 04-10-2010, 11:59 PM #2
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If it was anybody but Dr. Wynn I might. I was on Rebif for about five months and had a bad reaction. I doubted my treatment then and he put me on Copaxone.

Of course we have doubts, since this disease can be so variable. But Dr Wynn is one of the top in the country in his field. I know I'm in good hands with him.

If you change your mind about the trial, let him know though. You aren't obligated to do that at all.

Alternative treatments have no known records for success though, other than the opinions of those who have taken them and that hasn't been scientifically tested, it's just word of mouth.

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Old 04-11-2010, 12:39 AM #3
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There are good neuros and there are not-so-good neuros, and a few are really bad apples.

Have you asked your neuro about how many MS patients he has? Sometimes that can be an indication of how much experience he's had with MS.

There are neuros around who don't know much at all about MS.

This doctor is your employee, and if you don't agree with the recommendations or think you haven't been treated fairly, please don't hesitate to find a replacement.

You're the one in charge. The doctor can't force you to do anything you don't want to do.

I'd have doubts about being in a clinical trial too, I think.
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Old 04-11-2010, 07:17 AM #4
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Even a blind squirrel finds a nut sometimes. A neuro may prescribe the right thing for you but it's a hit, experience may not count. As a PPMSer, I've had some very experienced and highly regarded MS specialist neuros who can do nothing for me, so I look for listeners and ones I like. And who listen and treat symptoms.
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Old 04-11-2010, 08:53 AM #5
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Everyone with the disease is different.

The final decision is yours. Your neuro and doctors are there to guide you with their recommendations, but ultimately you're in control.

Some people can't make this decision and go with what the experts say. Some agree with the experts. Others decide while they value the experts opinions, they don't agree and wish to try alternatives.

I have a feeling you'll know what's best for you, and you may decide to go forward with doctors or choose your own path.

Good luck, not easy choices to make.
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Old 04-11-2010, 09:18 AM #6
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We always talked about stuff going on, which is probably why they had always scheduled my appointments near the end of the day so he had more time to talk with me. With the med thing, I always look up drug interactions, effects, etc. before I take anything. My experience with medications are hit and miss most times, so I always check for the rare and strange effects before I take anything. I'm always willing to see if it will make stuff better, but if it makes me worse - I always let him know.

Given my track record, was surprised at the reaction I had to the refusal of Ty - but crossing fingers the new guy will look at LDN as a possibility.

As to the alternative stuff, that's a hit and miss thing too. Good diet and exercise is always important. Plenty of water. I've taken some supplements and had some weird effects to those too. Even nature seems out to get me, lol! But that's mainly due to the IBS I have.

My mom did try for a long time a mix of vinegar and real honey every morning. I think it was equal parts in a shot glass. She swore by it to help with digestion, but I could never get myself to try it.
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