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. 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.

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.

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

Me thinks they doth protest too much.

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.

Debbie whats the name of med or compound?
My trial wish list was the estrogen estriol while on copaxone (gave me tysabri) or the discontinued interferon alfa n-3 (co pulled it for new oral being tested now for hiv).

Like Wiz said, our neuro is widely known-I was told by a traveling nurse he's known around the world.
He has been involved in the ampyra research as well as others. He told me as soon as I show negative results, or whenever I want to discontinue being in the trial, he'll pull me out.
"I'm there for you first," he said.

The direction of my care has always been my decision, after discussing everything with DH & me at length.
Guess I've answered my own questions...thanks for being great soundingboards!!

Debbie is Ampyra the drug you started thread about?

My neuro dropped me! Just for having the fda themself fax neuro IND form for estriol so all would be legal, nothing under the table, done right by law! He pushed Tysabri on me last year after I requested estriol about 3x and I finally gave in because im going downhill fast. Thankgod I made new neuro appt. last week for next week. Yesterday will likely be last Ty infusion under his name. I'll stop rambling since I can't use the words I'd like atm!

Link to pic of letter I had to drive 10 miles for today and to my surprise what it said:
http://neurotalk.psychcentral.com/al...pictureid=5227

I'm not too surprised since most God-like Neuros, don't like to be told what to do, by their patients.. I am so sorry, though, ED. let us know how it goes with the new Doc.

I think the problem for some neuros is MS patients neither go away cured and/or most don't die. They always come back reminding the neuro how little the neuro knows or can do about MS. Keeping up with stuff about MS is a full time occupation. I hope my MS specialist neuros are talking MS with colleagues all the time (lunch. Men's room, hall, etc.). I found my one general Neuro lacking in MS area. MS is a specialty area.