*FINALLY!!* - I have my new appointment dates.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

*FINALLY!!* - I have my new appointment dates.

Postby Xenu » Tue Mar 03, 2009 2:38 pm

I see Dr. Kerr on July 29th and Dr. Brodsky on August 4th.

I picked summer dates because I will be in school until the end of May.

Thanks, Chris (and everybody else) for encouraging me to be persistent!!

XO,
Me
:D
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Postby chrishasms » Tue Mar 03, 2009 6:36 pm

So does that mean you see Doc B and you start the treatment the following day like I did?
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Ha! Not so fast, BUSTER!!

Postby Xenu » Tue Mar 03, 2009 6:53 pm

I wish.

I'm in the process of finishing my Ph.D., and, while I will be "ABD" ("All But Dissertation") by the end of the Spring 2009 semester, I'll still spend the 2009-2010 academic year writing and preparing for my defense.

So this trip is to gather information, meet the Dr.s, ask questions, etc. and strongly consider HiCy as an option for the near future.

<3
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Postby chrishasms » Wed Mar 04, 2009 10:46 am

Some guy just emailed me telling me he did the treatment in January and he is 51. He's starting to get stuff back as well. It makes me fuzzy and warm. :D
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Postby chrishasms » Wed Mar 04, 2009 11:24 am

I got no idea what his EDSS is because most docs will tell you its a crappy way to judge someone lol.

He's had it since 2001 I know.

It bugs me to see so many doctors and neuro's flocking to this, or willing to help their patients do it, yet there are certain folks who won't try it because THEIR doctor didn't tell them too.

Even Keri will tell you it's worth it and she may need to do it again. You have chemo in your body much longer for cancer treatment than the 4 days it's in you for this.

I guess eventually people will get sick of waiting for their doctors to do it, get even sicker of hearing about people getting better, or at the very least progressing no worse and go about it themselves. Then maybe when 350.000 people start hollering they will be able to make this the norm sooner rather than later.

Bureaucrats sometimes, well most times, suck.
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Postby HiCy » Wed Mar 04, 2009 4:31 pm

The leap of faith is easy if you truly believe that there is nothing else out there that is going to help you get better or at least stop you from getting worse. That was the way I felt when I signed up for this back in 2007.

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Postby RedPenguins » Wed Mar 04, 2009 10:58 pm

It is definitely worth it - and I still continue to recommend it to others. I seem to have a fairly aggressive MS. My neuro told me this when was dx....that I wouldn't go a few months with relapsing. Well, 5 steroid courses in less than 15 months.... but, 5.5 months free from symptoms or any problems post HiCy.... unfortunately, it's back....but I'm gonna get them!!! Them MS buggers!
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Postby patientx » Thu Mar 05, 2009 7:16 am

Keri,

I'm kinda curious - how did your neuro determine that you had an especially aggressive form of MS?

By the way, it sounds like your going through hell right now, but I admire your attitude.
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Postby chrishasms » Thu Mar 05, 2009 12:30 pm

They just think some folks may be a little harder to get if it's extra aggressive.
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Postby RedPenguins » Thu Mar 05, 2009 7:12 pm

Oops, feel bad for hijacking the thread... but anyhow...

the neurologists I all saw felt that my presentation of the MS was SO aggressive from the beginning....it came on gangbusters, as they put it. The amount of damage and activity - and physical presentation...all kinda out of nowhere....they just told me it didn't look good. And thus far, I hate to say it, they have been accurate.

I'm beginning to get myself accustomed to the idea of HiCy again....


~Keri
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Postby Xenu » Thu Mar 05, 2009 8:56 pm

Petakitty wrote:It's a leap of faith you took Chris, that leap is difficult for many to take.


For me it's not so much a "leap of faith" question as simply a logistical and cognitive one.

Cognitive in the sense that I tend not to make rash decisions, especially medical ones, and thus would rather spend more time researching, observing / talking with other MSers who have already undergone the procedure, gathering information, asking questions, etc. than rush into any sort of treatment (HiCy or otherwise).

Logistical in the sense that I have a number of personal and professional goals that are important to me and that, quite frankly, do come first, especially now that I am so close to accomplishing them. I know that there are risks involved in any aggressive protocol and, even if everything were to go perfectly smoothly, I'd still probably be out of commission (unable to really work, etc.) for at least a few months. So if I choose Hicy I really need to time it in a strategic way, so as to avoid messing up my career trajectory, etc.
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