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Posted: Tue Nov 25, 2008 12:11 pm Post subject: Think of all we have to be happy for.
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!!
Joined: Sep 12, 2006 Posts: 902 Location: Dayton, Ohio USA
Posted: Tue Nov 25, 2008 12:14 pm Post subject:
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. _________________ "When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"
Joined: Sep 11, 2007 Posts: 784 Location: southern California
Posted: Tue Nov 25, 2008 12:43 pm Post subject: Re: Think of all we have to be happy for.
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 diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
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
Joined: May 04, 2006 Posts: 3457 Location: Mid-Michigan
Posted: Tue Nov 25, 2008 7:39 pm Post subject: Re: Think of all we have to be happy for.
Hi Chris,
This is all new to you so I'm sure there is no way that you know yet but I imagine and hope that you will continue working with the people from JH.
Being researchers I can't imagine that they wouldn't have a strong interest in your situation and others like it.
I'd be interested to know how uncommon this situation is. You and I are convinced that enhancing lesions after treatment is a sure sign of treatment failure. With more thought, I'm not sure it is.
It seems that with or without an active MS disease process there are certain things (heat, fatigue, exercise, sickness, etc..) which cause increase of existing symptoms/re visitation of old symptoms. With that in mind, I suppose we all have to wonder what would be seen on MRI in those corresponding areas of the brain during those times of heat, fatigue, exercise, sickness, etc...
Is the common denominator inflammation? Or maybe more accurate, is the common denominator heat in those previously MS damaged and under capacity neural circuits compounded by heat (temperature), fatigue, exercise, sickness, etc..and the heat caused by overtaxing those circuits causes inflammation which shows up as enhancement regardless of actual disease activity?
As someone mentioned earlier (Lew?), while not being worthless, I think there might be times that enhanced MRI should be considered as less than conclusive evidence of actual disease progression because there are other causes of inflammation.
Bob _________________ Wife diagnosed with RRMS in Feb. 2006.
Joined: Jun 02, 2008 Posts: 88 Location: Mississippi
Posted: Tue Nov 25, 2008 9:28 pm Post subject:
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.
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.
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.
Joined: May 04, 2006 Posts: 3457 Location: Mid-Michigan
Posted: Wed Dec 03, 2008 7:57 am Post subject:
mommasan wrote:
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.
Hi Sandy,
I know it sucks, but THAT is the way your system is supposed to be after (hopefully) successful treatment.
I've heard both the Campath and Revimmune researchers commenting about treatment being surprisingly non immune compromising to the patients. Well, the whole idea of the thing is to totally compromise the immune system and if it's surprisingly non compromising, it's not doing what it's supposed to and just ends up being a higher grade of short term immune suppression. That's fine in regards to setting the disease back in the short term but not the same as "rebooting". _________________ Wife diagnosed with RRMS in Feb. 2006.
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