I have my appointments.

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

I have my appointments.

Postby Xenu » Sat May 24, 2008 8:15 pm

I see Dr. Kerr on August 6th and Dr. Brodsky on August 12th. If all goes well and I feel comfortable and non-scared-shitless, then I'm looking at HiCy in Summer 2009.

I would have liked to have seen the Dr.s earlier (example: in July), but unfortunately I have to testify in a court case (I'm a witness) that begins on July 7th, so...

Still: I am excited to be going this summer.

:D
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Yay!

Postby RedPenguins » Sat May 24, 2008 10:34 pm

776 - that is great news!!

I have my appointment scheduled, too. I have been so gung-ho about this - and still am - but now that it's SO soon - my nerves are kicking in big time!

Doesn't help that I'm having a nasty flare right now.

I can't wait to go!! I made my reservations and I'm all set. I will let you know how it goes!

~Keri
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Postby chrishasms » Sun May 25, 2008 6:41 am

Chillax lol

I learned that killing yourself doesn't make time go faster. Just makes you feel worse.
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Postby mrhodes40 » Sun May 25, 2008 7:24 am

We will all be looking to read about your experience

Why are you waiting a year to get the actual treatment is that how far out they are nowadays?
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Postby Xenu » Sun May 25, 2008 10:28 am

I have my appointment scheduled, too. I have been so gung-ho about this - and still am - but now that it's SO soon - my nerves are kicking in big time!


Red,

I have noticed that. You should try to chill (as Chris says!). Stress is no good for you.

Everything will work out. Just be patient and preferably calm.

Regards,
V.
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Postby Xenu » Sun May 25, 2008 10:33 am

Why are you waiting a year to get the actual treatment is that how far out they are nowadays?


MrHodes,

Thank you for your kind reply.

As far as I know, no---that's not how long the wait is nowadays. My decision to wait a year is really a personal choice. I am a 28-year-old doctoral student right now, and I still have another 9 credits of coursework to complete---plus my General Examination to take---before I will be "ABD" (="all but dissertation"). In the meantime, my entire life (i.e. - jobs, and therefore income; health insurance, because it's tied into both my status as a full-time grad student *and* my employment as a Research Assistant within my program, etc.) is dependent upon my continued participation within my program.

I am single and do not have family that would support me financially while I recovered.

Therefore I had a choice:

1. Gte HiCY THIS summer, and go back to school in September---unlikely, given the time needed to get appointments, coordinate a trip to Baltimore, get approved, undergo treatment, and recover....plus July is out because I have to testify in the aforementioned trial

or

2. Get HiCy next summer, probably in June, thus allowing myself 2-3 months to recover before I begin writing my dissertation.

Obviously #2 was both the more logical and the more feasible option.

HiCy is not going anywhere, and I haven't even had MS for a year yet.

No need to rush.

:wink:
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Postby mrhodes40 » Sun May 25, 2008 11:50 am

AHhh, yes life must be ordered and it makes perfect sense to me.
I wish for you a beautiful year of good research findings
marie
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Postby RedPenguins » Sun May 25, 2008 2:10 pm

Oh, I'm actually totally chilled right now - just the reality of it is hitting. I leave next saturday evening - arrive in Baltimore on the first, and meet with the docs on JUNE 2! That is right around the corner. I think I'd be nuts if I weren't a little nervous, right? 8O And it's a good nervous, kinda like an excitement - but this is a major decision that I am considering (well, I made my consideration, now I just need the docs all on board!).

My ultimate goal is to have the treatment this summer.

I've "only been sick" for almost 5 months now...and that is just well, too long already! I know, many of you have struggled for years....and I admire all of your strength, I really do. This 5 months has taken it out of me - and I don't feel all that strong right now....so, I'm loading the artillery with all I have and I'm gonna win the battles and the war! :)

~Keri
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Postby Xenu » Sun May 25, 2008 3:45 pm

now I just need the docs all on board!).


Keri,

You may or may not even be a good candidate for the procedure. If you are cleared medically and recommended for HiCy, great. But mentally preparing yourself for a possible: "Sorry, but you are not a good candidate for this treatment" might be a good idea, too. I think you mentioned that you were having a bunch of your friends write letters to the JH team (or I could possibly be confusing you with someone else on here---correct me if I am wrong). Whether or not you get approved for HiCy has nothing to do with what a great person you are or how gung-ho you happen to be, but whether or not, medically speaking, you are an appropriate candidate for this treatment.

I don't think that a letter-writing campaign or 80,000 phone calls are necessary.

You are clearly all set and on your way to meet the Doctors, and that is wonderful news.

But seriously, chill out.

~V.
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Postby RedPenguins » Sun May 25, 2008 7:45 pm

Thanks for your comments, V.

Yes, I was the one who said that my friends wanted to contact the team at JH to plead my case - not to have them accept me into treatment - but to be seen sooner than months from now. However, it did not come down to that. I do not know how they are scheduling appointments - if it is first come, first served - or if they are doing it based on severity of the case.

I was told that I am a good candidate for the procedure and that is why I am invited down for the initial consult. I have also heard that some people aren't even invited down for this stage, as they wouldn't be an ideal candidate...and that is based on what the docs and coordinators have said, not from people on the boards.

As for chilling out, I have already said that I am chilled out. My levels of "fear, nervousness, and excitement" are at the appropriate levels given the circumstances at hand: from going to meet doctors where I will be considering this new treatment, to the level of pain and problems I am suffering, to the drastic changes in my life the past 5 months, and from the fact that my level of disability went from 0 to a 3-3.5 so quickly. You know, in one breath my neuro told me that I am rapidly declining, but in the next minute when I told him I was considering HiCy he told me that was drastic. I'm not sure what sense that made!

As for preparing myself mentally to be rejected from this treatment - well, that is not something I plan on dwelling on or overly preparing for. I have to go in with the attitude that the doctors think I am an ideal candidate...and I will advocate for myself to get this going as soon as possible. This goes along with the fact that I will not lay down and prepare myself to continue declining rapidly....or to accept the crap that this MS has been causing me. I know I haven't been sick that long and I have heard it takes a long while to adjust and adapt or even accept - but the thing is - I will never lay down and accept this. I will fight this guns-a-blazing. I am young - I was just starting the life that I always dreamed of - when BAM - the rug was ripped out from under me.

I am sorry if my posts are causing your levels of anxiety to rise...that is not my intent - but if they are, then please feel free to skip on over what I have to say. Like I said - my levels of all of the feelings I am experiencing are quite "normal" - and anything less - meaning not to be nervous, cautious, excited, scared, numb, etc. - either all at once or at different times - well, that would just be insane. This isn't like going in for a booster shot - this is huge on lots of levels (emotional, physical, financial, etc.).

Also - I think everything in my emotions went into high gear - because just ten days ago, I was told I was a candidate but that it could be months before we even scheduled an appointment. Fast forward one week (just a few days ago), and my appointment was scheduled for next week! I had started to put HiCy in the back of mind - and was trying to focus on the present and living....but now it is in my face - it is the present...how can I not be reacting right now?! I'm getting on a plane in less than a week. A week and 12 hours or so from now - I will be meeting with the doctors! That is incredible! Shouldn't I be excited and nervous? I think I will probably hit the moment of sheer relaxation when the docs tell me that I am an ideal candidate and that we're gonna get the ball rolling. Then I can relax. Then I can take some more deep breaths and know that I am on the right track to healing, to the possible cure. (and then, the nerves will kick in again while I wait to hear about insurance coverage and the final date and arrangements for treatment...but again, that is all par for the course.)

Oh yeah, one other things, not sure if I posted this on this board or another, but just an FYI - my moods and emotions a bit whacked out at the moment, as I am in the middle of a nasty flare and just started 1000mg (1 gram) daily of oral prednisone. So everything is a bit exacerbated right now...though, I was starting this emotional ride before I started the meds on Friday night!

I hope no one was offended....just as I'm not offended that I was told to chill out.

~Keri
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Postby chrishasms » Sun May 25, 2008 8:24 pm

Man oh man!! LOL When I still had the crap my fatigue never would have let me write that much!

If you are meeting you are in. Haven't heard otherwise.
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Postby RedPenguins » Sun May 25, 2008 8:29 pm

LOL Chris. Steroids plus fatigue plus exacerbation issues....VERY much not a good combo. I go from flying high one minute, to literally barely able to hold my head up 5 minutes later.

I wish I could've had them via IV early in the morning...but my current neuro is a real problem right now....and he didn't respond to me for days. Thus, the on-call doc had to get me these pills on Friday night. He tried to find it for me to orally take the liquid form, but that didn't work. So now I suffer a little more than I would with the IV....but I'll live. My spirits are up - I'm thinking of planning a trip to the balti aquarium on my free day (sunday). Depends on my level of energy I guess. Can never plan much in advance these days :(

~Keri
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Postby Xenu » Sun May 25, 2008 8:48 pm

Keri,

Yeah...your anxiety level (or: "energy level"---whichever term you prefer) is really just a bit much for me (personally) right now.

I started this "topic" to let people in the forum----some of whom I have been communicating with for over a month now----know that I got my appointments set up, and ended up being...for lack of a better word..."bombarded" by your entire life story in this thread.

I am sure you're a cool person, but this is just a bit much for me right now. There are a lot of people in the forum; this isn't just about any one of us. Really, I just wanted to share some good news with some people I had been talking to on here...

Take care

-V.
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