Yeah, I hear ya, Arron. I have tried that route also. I have even had MS friends in other States talk to their physicians about looking into it and/or trying it, but they seem to get nowhere, also. (So far anyway.) I have even challenged them. I said "Don't believe me. I don't care. Just read up on it yourself and decide!" I can't even get them to do the "paper research" that I've done.
And I haven't been pushing for actual clinical trials for a while now. My proposal has been for bench research. (You know, though, for all we know, they ARE doing something with it and/or looking at it, but just aren't telling me. I know the one thing none of them are telling me is that I'm full of crap! That tells me they believe me allright.)
Remember, my doggone first neuro himself started (and witnessed) the whole thing in the first place. He knows what the possibilities may be. My (now former) PCP has it, and the neuros at Vandy have it.
But most neuros deal with the pharmas (and probably have to). I hate to sound conspiratorial (truly, I don't), but I'm telling ya. IF this were found to help at
all, it is incredibly cheap. Plus, the "unspoken" tension behind many doctors is the threat from pharmas regarding "anti-trust" actions against physicians.
I also wrote to Aventis about it (who makes Norpramin - I won't take the generic desipramine. It's slightly different than the original. You know me, I researched that, too.
) Shoot, I'm not sure that even they want to pursue it, because it's not a big enough money maker for them, either. At least not as far as compared to all the "injectable" treatments which cost thousands.
Try to find an MS neuro who is NOT somewhat "tied up" with the pharmaceutical companies who will take the risk of prescribing it off label or something. Ya know? No pharma is going to want this to proceed nor to hear any neuro "back it". (Some of this information of mine comes from the "horse's mouth", too.)
That's why you'll see me get so frustrated. And why I finally gave up. I swear it's all "money motivated".
There is one other avenue to pursue yet, but I need to re-write all these months worth of "tidbits" I've been posting in some type of formal report, and man..............that's hard to do, and get everything all together, and rewrite it all with footnotes (yuck), etc.
Plus, the NMSS still has promised me that they are yet going to talk about it with Dr. John Richert when he gets on board there in April. But after he sided with pharmaceutical companies recently, I personally wonder whether he'll support that it be pursued.
Can you tell I'm discouraged? But, on the other hand, I am also enlightened that others are beginning to find some of the same evidence that supports some of my claims.
Surely, they can't ignore it forever.
I mean, what the heck else do they have to offer MS sufferers? At least this is a chemical agent that has been on the market since the 60s and has MOUNDS of research done on it. And all we are talking about is a much lower dose than is required for full treatment of depression, even.
Doesn't it make you wonder, though, why none of these doctors (especially MS specialists) are reading what all of us are regarding ALL of these other options, not just this one?
I literally had to almost "scream" at my neuro, "What's the
harm in just
trying it?! You see that it is a pretty safe drug. I'm sensitive to medications, and that's one of the few I can take with no side effects, so come on. Let's just TRY IT!" He finally just said "Ok..........fine. I'll call it in."
(Literally having to argue and fight with your physician. What's wrong with that picture?
)
Deb
EDIT: What I'd really love to do, except he would probably kill me, is to have a million letters go to my first neuro (because you don't even have to explain a thing to him - he has ALL my research since day one) and try to persuade HIM to get something going on this. He could get it done. He's high profile.