MA?

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MA?

Postby Xenu » Thu May 01, 2008 8:57 pm

Is there really NO Tovaxin study happening in Boston, MA?

You have got to be kidding me....

:cry:
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Re: MA?

Postby Lyon » Fri May 02, 2008 6:37 am

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Postby Xenu » Fri May 02, 2008 11:39 am

Hey Bob,

My neurologist seems to have no interest in research, so I doubt she'll be helpful, unfortunately.

I think Lebanon, NH is several hours from Boston.

Also, I don't have a car...or even a driver's license, for that matter.

Ugh.

I am going to die.
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Postby Lyon » Fri May 02, 2008 12:38 pm

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Re: MA?

Postby JanethePain » Mon May 05, 2008 9:52 am

packedby776 wrote:Is there really NO Tovaxin study happening in Boston, MA?

You have got to be kidding me....

:cry:


::: fingers and toes crossed for a study center opening yesterday up your way!:::
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Postby JanethePain » Mon May 05, 2008 9:56 am

packedby776 wrote:... I think Lebanon, NH is several hours from Boston...


I think our very own av8rgrl has the longest TovaxinTrip of any of us--from Idaho to Portland, OR. "Where there's a will, there's a way," you know... and it's never too early to start getting those ducks in a row for Phase III.

By the way, your neuro sounds like something of a jerkette to me (yeah, I don't cut neuros much slack). Fire her if/when you decide she's not advocating aggressively enough for you, okay?

Janethe Pain//Firess of FIVE neuros in four years... :lol:
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Postby patrickm » Mon May 05, 2008 2:48 pm

Janethe Pain//Firess of FIVE neuros in four years... :lol:


go Jane!!

I've been really lucky, but I concur. Life's too short and we're all too F'd up to mess with a crappy neurologist. Assuming they ALL deserved it, I applaud your vigilance...

and trigger finger!
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Postby Lyon » Mon May 05, 2008 2:49 pm

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Postby av8rgirl » Mon May 05, 2008 6:42 pm

JanethePain wrote:
packedby776 wrote:... I think Lebanon, NH is several hours from Boston...


I think our very own av8rgrl has the longest TovaxinTrip of any of us--from Idaho to Portland, OR. "Where there's a will, there's a way," you know... and it's never too early to start getting those ducks in a row for Phase III.

By the way, your neuro sounds like something of a jerkette to me (yeah, I don't cut neuros much slack). Fire her if/when you decide she's not advocating aggressively enough for you, okay?

Janethe Pain//Firess of FIVE neuros in four years... :lol:


My one way trip is about 500 miles - a little over 8 hours if I drive but only a one hour flight. I fly most of the time. The office there is pretty good about getting everything done so I can fly over and get everything done in one day so I don't have to spend the night. The only unpredictable is the lab...and that's because of me ---someones it takes them a little longer than expected to get those 13 vials of blood out of me!!!

The MRI staff is great about getting me in and out ASAP (that's my little cat nap time!)

Jane the Pain...LOL! Don't you ever change!!!

:)
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Postby Lyon » Mon May 05, 2008 7:25 pm

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Postby patrickm » Mon May 05, 2008 10:39 pm

av8rgirl wrote:
My one way trip is about 500 miles - a little over 8 hours if I drive but only a one hour flight. )


I am humbled and bow in your direction.

I shall never bitch about the construction on the Edens Expressway again over the next year that they're working on it.






...at least within your earshot.
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Postby JanethePain » Tue May 06, 2008 6:52 am

patrickm wrote: go Jane!!

I've been really lucky, but I concur. Life's too short and we're all too F'd up to mess with a crappy neurologist. Assuming they ALL deserved it, I applaud your vigilance...

and trigger finger!


From what I've read on that other MS board I frequented for such a long time before I was mercifully directed here, I'm convinced my experience with neuros is far from unique.

#1 was listed on one of the MS websites as THE big cheese for MS here in the Cincinnati area. He gave me exactly five minutes of his time, dismissed what I had to say about the therapy option I wanted to check into, and left his nurse to deal with the "collateral damage." But the thing that really stuck in my memory was how his entire staff looked at him with that glassy-eyed wonder so much like the Manson Chicks gave old Charlie... 8)

... I can't seem to remember the reasons I struck 2-4 off my list... I think it may have been some high-handed assumptions that I could drop everything and re-schedule at their convenience on a moment's notice; turnabout was never fair play, of course--requesting changes from my end meant delay of months... ugh... so many of these quacks need swift kicks up the backside...

#5 was absolutely THE failure to communicate. I'm sure this gal is brilliant--but she needs to confine her brilliance to a lab and not inflict herself on people. There's nothing like being scolded at my age. I stopped taking Avonex in April '07 so I could be "washed out" and ready for Tysabri as soon as was possible. I understand now that she's working on another therapy plan--why else would she dismiss Tysabri with such venom? Anyway, I found it insulting that she assumed I wasn't serious about my therapy--I, so anal I injected at the same minute/hour each week--without fail--plumb sickening.

MS patients have to have neuros they can work with--I'm VERY lucky to have that now (although he has needed a swift kick once--and got it--and benefited from it a great deal, to my way of thinking).

Of course, it isn't always enough to simply find another neuro--when they step out of line in a bad way--like Her Highness did with me--sitting down and writing up a complaint is most satisfying.

I like to think Her Highness's decision to return to NIH was somehow tied up with my letter to her superiors... probably not true but worth the giggles. Often. :D
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Good news, guys!

Postby Xenu » Wed May 07, 2008 6:07 pm

I talked to my Mom, and she was like: "New Hampshire? I'LL DRIVE YOU, OBVIOUSLY. Get in touch with them and see if you qualify."

:D

Yay!

So I'll check that out.

Does anyone know if they're still taking people for Phase II?
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Postby flipflopper » Wed May 07, 2008 6:35 pm

I’m sorry to say that they are no longer recruiting people for the phase IIb trial. You will unfortunately have to wait for the phase III trial.



To add to the previous discussion, I also travel a long distance to be in this trial (although not as far as av8rgirl!!!). My one way trip is about 350 km or about 3 1/2 hours. I also wait at the borders so it takes longer than this for me to get to my trial site
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Postby Xenu » Wed May 07, 2008 6:42 pm

Fuck. I am guessing that the Phase III trial won't happen for awhile, either.

:?
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