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Bad news - MRI results

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Lyon

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Posted: Thu Dec 18, 2008 7:04 am

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Joined: Wed May 03, 2006 3:00 pm
Posts: 6063

Last edited by Lyon on Sun May 08, 2011 7:09 pm, edited 1 time in total.

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chrishasms

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Posted: Thu Dec 18, 2008 7:57 am

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Joined: Thu Sep 14, 2006 3:00 pm
Posts: 1161

Keri reactivated. Was she not at JH?

Also, come March when they re-blast me hopefully, I will not miss one single shot. Also, if they will let me, I will ask them if I can be the first person to use 40mg worth of Copaxone as I have seen some efficacy studies and results were good.

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mommasan

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Posted: Thu Dec 18, 2008 8:16 am

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Joined: Sat Mar 15, 2008 4:00 pm
Posts: 122

Dr. Kerr couldn't confirm Keri's reactivation. I don't know whether he saw her MRI results as of my appt. with him yesterday.

Sandy

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RedPenguins

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Posted: Fri Dec 19, 2008 10:59 pm

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Joined: Sat Apr 26, 2008 3:00 pm
Posts: 153
Location: Los Angeles, CA

Hi Sandy,

Yes, Dr. Kerr is aware of the situation - but probably did not get the official report yet. I will be seeing him on January 12 - for my 6month visit - as well as to discuss what I will be doing next.

I didn't know that Chris and I were the ONLY ones so far to reactivate. Damn, being special isn't always so good, is it Chris?

I will be sending him the CD of my last two MRIs (my 3month in October - which showed improvement and the one from last week that showed new enhanced lesions). I didn't get around to sending it out this week as I've been quite sick.

I just finished 6 days of IVSM (first 3 days @ 500mg, then last 3 days at 1000mg). I'm a wreck on SO many levels.

Dr. Kerr did mention re-dosing as an option - and I plan on going for that....the sooner the better. I'm imagining (in my very non-MD mind) that they might find that HiCy may need to be done 2x at least for full effectiveness - and in my thoughts, doing it within a 6 month period sounds about right. Tee hee. I know, I'm somewhat delusional - but this is my plan. I am also thinking around March - although if it can be pulled off earlier, then I am all for that, too.

I don't know what other options he has in mind - but as we know, Tysabri is off the table b/c I'm immuno-compromised - but maybe he knows of other magic.

As far as dosing heavier people - well, as long it's my (big) body, I say DOSE ME UP. Bring on barrels of the stuff - I want this MS garbage gone for good. I kept swearing up and down that they mis-read my weight and left off a digit

They originally offered me this coming monday (the 22nd!) to come in and meet - but there is no way I can pull that off - as I'm still in this exacerbation as it is - and I'm supposed to be traveling on Wednesday. Not sure how I'm going to be pulling that off either. So I am getting my ticket now to see them on Mon, Jan 12th.

I'm still very devastated and would like to put my head in the sand - but I have to keep fighting - the good fight is not out of me yet - not as long as there is still SOMETHING else to try. (And the CRABs aren't going to do it....but if I can do HiCy again - I will keep going for it.)

I hope everyone else remains stable or continues to improve...

~Keri

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Posted: Sat Dec 20, 2008 8:32 pm

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Joined: Sat Oct 20, 2007 3:00 pm
Posts: 946
Location: The United Kingdom

Quote:

but maybe he knows of other magic.

Maybe Statins are worth taking too? Anyone know of a reason why that might be a bad combination?

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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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