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?

No...Ampyra is the "new" drug for increasing walking speed/distance. It's a reformulated drug that was available in compound and was approved by the FDA as the first drug specifically for a MS symptom.

The thread is about a clinical study run by Ely Lilly...seems to work to contain B cell activity, from what I remember. Neuro seems to think this will work against what he's been seeing in terms of my symptomology...

Ok. I'll look it up thanks. Though if you know the name of the compound you'll be getting, feel free to type it so I dont have to do the leg work
I see my neuro Wednesday and was just typing my numbness progression notes to hand him. I log everything. There's no better perfect trial patient then me! Goodnight.

edit - Thursday it is and finally got them to leave the slot after me open so I have 1/2 hr thank god.

I don't like my neuro. He's an a"$. Never gives me reassurance, advice or explanations that answer the question I ask.
I don't want to be molly coddled, but all the same it's nice to feel like I matter. He just poo poos me and barks orders.
I'm dropping my neuro and asking for a new referral just as soon as I need to go to my GP next.

I only questioned my present Neuro of three years, twice. She asked if I was interested in Ty, I said no. Then last visit she asked if I was interested in Ampyra, again I said no.

She knows, and believes, by testing me, that LDN has helped me more in the last 6 years than anything I was on previously, so it is not an argument, more like a discussion. She lets me know my options but doesn't bark orders.

If she feels the need to go into more depth about something, then we discuss that also. She called my PCP to have LDN prescribed for me in 12-08.

Well, it is up to me, not her, she doesn't have MS, I do. I know she is a keeper. I like her attitude and she gives full, complete exams each time. Not big on MRI's, until I did so well on LDN that she checked for progression, there was none. Oh happy day.

Don't get me wrong, I still have lots of MS problems, but I deal with them as best I can. I try meds, if they don't help, why waste the time, money, and side or after effects?

I would not have a doctor ordering me around, just to please their ego or push drugs. I have been lucky most of time when I had to switch Neuro's.

I have had some green (not knowledgeable) ones, and some "My way or the Highway ones." They became my one or two visit Neuro's, and then I was out searching for a new one in my medical plan.

Patients have rights too.

I printed a bunch of LDN stuff for neuro tomorrow.
Also printed docs on estriol, Minocycline, and a vaccine called BHT3009.
Also called and had FDA fax paperwork for estriol to neuro. This will be last time I push for estriol with him. Also called Acorda and spoke with pharmacist. Also printed out my last 4 month MS progression report (not good). I wish I had my own prescription pad.

The neuro I went to for four years moved across the state. I loved him, and I trusted him. He listed to me, I listened to him. It was great.

I've only seen my new neuro once. He seems okay. I'm his only patient on TY, but his office got everything set up for me to change infusion centers to one that DH used for his chemo, great nurses, and just five minutes from the house.

I just have to get used to this new one and quit comparing him to the last one.

I'm at the point in my MS where I make more decisions in my treatment, whether or not to try something for MS. I try to stay informed, but there's so much going on now with treatments. I'm not afraid to question my neuro (or PCP) about things, where I used to be like a sheep and do whatever my doctor recommended. It was very liberating to take charge of my own health!