Think of all we have to be happy for.

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

Think of all we have to be happy for.

Postby chrishasms » Tue Nov 25, 2008 10:11 am

I write this with a heavy heart...in ways. See the biggest proponent for mind over matter, and this treatment has fallen first. Some may be happy I guess lol.

It is official, right off the MRI report:

There are mild changes in the mild cerebral and posterior fossa demyelination. Most predominantly, the left lateral plaque in the splenium is larger and there is a new left frontal enhancing plaque.


So I guess we'll go do it again. I am really hoping my Doctor, John Corboy, who used to work with the guys at JH will do this here so I don't need to travel. If not maybe I can buy some time with TY or Rituxan till March when the medicaid kicks in andthe hospitalization will be free.

Worse part is I feel great still.

But I just had 9 months of pure 100% unadulterated life. I have a whole great deal to be thankful for this year because I actually got better a little.

At least something out there this year brought something back to people! Lets be happy!!
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Advertisement

Postby Loobie » Tue Nov 25, 2008 10:14 am

I agree Chris. I'm sorry to hear about your MRI, but happy to hear you are still feeling better. My brain can, and some say is, be a solid placque and as long as I feel OK, I just don't care. So live up the turkey day and I hope you continue to feel better.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Re: Think of all we have to be happy for.

Postby cheerleader » Tue Nov 25, 2008 10:43 am

chrishasms wrote:.... I just had 9 months of pure 100% unadulterated life. I have a whole great deal to be thankful for this year because I actually got better a little.

At least something out there this year brought something back to people! Lets be happy!!


Chris-
I've always admired your honesty...now more than ever. It's easy to come on here and post when things are good. Harder when they're not. You've helped so many people with your web site and postings on Revimmune...I just read Keri's post...wow.

Keep living every day to the fullest. The docs still don't understand the brain, like Lew says, it could be all plaques, and still firing. My hubby's brain is proof of that! His runs on music, joy and "unadulterated life."
Keep searching, keep sharing, and keep the faith.
Thanksgiving wishes,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5077
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby mrhodes40 » Tue Nov 25, 2008 12:57 pm

Gosh I am just really sorry Chris. I hope you get a better take the second pass if you go that way.

Or maybe you'll find another trial or something to get into that fits your idea. Good news on the medicare! That helps a lot!

I really appreciate all you've done by posting your experiences. It is a great gift to others. Thanks! I wrote JH myself based on it, I did not qualify myself, no inflamation.

But without you I'd not have even tried. Thanks for sharing your experience and being part of the ongoing information that takes us all forwards!
marie
ps honestly, sharing what you have been through might make it easier for someone who has to pay out of pocket to decide what to do, negative experiences are very VERY hard to share, but probably more important than positive. It's easy to *think* we are doing really well in spite of old MS sneaking in behind the scenes, but when the reality strikes us it is an act of pure unselfishness to share that. I really respect that. Good job
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Re: Think of all we have to be happy for.

Postby Lyon » Tue Nov 25, 2008 5:39 pm

.
Last edited by Lyon on Sun Nov 27, 2011 11:05 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 2:00 pm

Postby catfreak » Tue Nov 25, 2008 7:28 pm

Sorry to hear this. I go back for an MRI on 12/8 after taking rebif for 7 months. I have been hopeful for something different to come along since I don't like taking the rebif. Good luck in future.

CF
User avatar
catfreak
Family Elder
 
Posts: 791
Joined: Sun Jun 01, 2008 2:00 pm
Location: Mississippi

Postby chrishasms » Tue Nov 25, 2008 8:32 pm

Bob I hear ya...I don't feel bad and everything I did get back I have not lost. I had some tinnitus and a bit of a heat sensitivity and I went, 'oh oh'.

Hey if I have a active lesion and still feel this good it's OK. Plus if I can do it again sign me up. Now that we have a good president I may get a stem cell or two.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Postby CureOrBust » Wed Nov 26, 2008 5:20 am

9 months of pure 100% unadulterated life
a active lesion and still feel this good
I can do it again

sign me up too!
User avatar
CureOrBust
Family Elder
 
Posts: 2926
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby mommasan » Wed Nov 26, 2008 3:02 pm

Hope you are right Bob. I'll let you know. My physical condition has been really poor MS-wise lately. Lousy walking, arms and hands are not functioning as well as they were, plus nerve pain. I've also been sick with a really bad case of tonsillitis for a month- the pus has finally left my tonsils, couldn't see them at all for a while. Glands are swollen again though. My kids bring home everything and I am still immuno-compromised 5 months out. Neutrophils are not in the normal range yet. Also, I have no child care right now and my husband works a lot.

Both my kids are allergic to all foods and my son is on a feeding tube. Between homework, making the formula, making the bottles, all the washing of bottles and tubes, taking my son to Tai Kwan Do, doing the tube feedings, diaper changes, all their meds, etc. etc...I am once again put in the position of doing twice as much as a healthy person. Not the first time- this frenetic pace is the norm in our house. Eating and sleeping have become a luxury. Copaxone is still a never-missed priority.

MRI's are next week...If I am the second person to reactivate I wouldn't be surprised.

Gotta say, though, it beats being practically bedridden and having my food cut up for me and wearing diapers which is where I was before the HiCy.

Sandy
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 3:00 pm

Postby rainer » Tue Dec 02, 2008 9:28 pm

Sorry to hear this. It is easy to see how people involved with this *%@!$ of a disease get jaded. 2 steps forward and 1 step back is still progress.
User avatar
rainer
Family Elder
 
Posts: 367
Joined: Thu Jan 17, 2008 3:00 pm


Return to Revimmune (cyclophosphamide or cytoxan)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service