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...

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.

:hug: :hug: :hug:

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.

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.

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. :hug:

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.

My neuro is not a ms specialist so I definitely questions his advice at times. He has also referred me to a ms clinic in St. Louis a few times when he thought it would be a good idea to get another opinion. I think he is now at a point where he does not want to prescribe anything new for me because of all of my reactions;). Maybe he will change his mind once again after my next MRI.:rolleyes: I am going to push him on ampyra at my next appointment since he would not even consider it when I saw him in January. I have also asked him about LDN a few times, but he keeps ignoring the topic.

Debbie, I am not sure about the trial. I think if I lived nearer a clinic that was offering one that a specialist recommend, I would seriously consider it. I did check out the one that you mentioned, and I most likely would not be eligible. Do you meet the criteria? Peoria, Il is another listed site which is about 2 1/2 hours from here.

Jim's neuro acknowledges that ms is different for everyone so yes we do question her advice and she listens and adjusts as necessary. :D

I question any Neuro, so called MS specialist or not, who insists on his MS patients taking a DMD, with abandon. They have no idea if the particular DMD will help or harm your body. :rolleyes:

How dare they get their god-like panties in a wad, if you refuse a treatment of unknown benefit or harm! :mad:

Me thinks they doth protest too much. :confused:

My neuro is not an MS specialist. If I had a stroke or something, I would probably feel confident with him. He's the only game in town, but do I trust his advice? Not especially. He told me to use the autoject to avoid the IPIR from Copaxone, which is bogus. And he told me that I "didn't have enough lesions to cause the fatigue" I described. What?

I stopped taking my Copaxone 5-6 weeks ago, and I haven't made an appointment to go tell him yet. I really don't think he has enough experience with the DMD's to make a good recommendation, as if it isn't a crapshoot to begin with.

I really want to take some time before (or if) I decide on any other DMD. I know he'll pressure me to start a different one, and probably scare the jibbers out me thinking I'll have a massive flare-up if I wait. (I scare easy)

I'm sort of starting not to trust ANY med at this point. I even think my vitamins are going to jump out of the bottle and slap me.