My 9 month HiCy follow-up

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

Postby mommasan » Sat Mar 28, 2009 10:18 am

I get brain, c-spine amd t-spine every 3 months, so I know my lesion status has not changed anywhere in the CNS.
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Postby chrishasms » Sat Mar 28, 2009 2:21 pm

I've asked if they wanted a spine and they said it's not necessary at this time. I guess if the brain is showing the lesions are healing the others may be a given.
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Postby happytown » Mon May 24, 2010 4:19 pm

There has to be a cure for this somewhere in the world.
Last edited by happytown on Wed May 26, 2010 12:48 am, edited 1 time in total.
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Postby shyguy » Tue May 25, 2010 7:53 am

happytown wrote:Are there any new updates from cytoxan and how you are doing if you have had this treatment? I find it hard to believe it is a good thing to wipe out your immune system. It is not necessary. With MS you have some protection, but wipe out what is left and you are wide open. I know it sounds like a wonderful fast miracle. But I just do not believe it for a second. I wish it was not approved in the states. Stem cells are not approved. CCVSI is not approved. But people that get both of these treatments have phenomenal results. I understand people get desperate, I get that. But this is so violent and drastic. Wiping your immune system out, and I dont mean to offend anyone, but it does not make sense. I am glad it has worked for some people. But, there are actually more patients it has not helped than those that it has. It is sad to have MS but a person can make it a triumph or a tragedy. And I know people are saying,"You don't understand.." I expect that but I don't think people with MS understand how scared a person gets when they love someone more than life, and they don't take that into account. Why not try other treatments first like stem cells of CCVSI, or both? Don't get me wrong, you can be against something but still be supportive of your significant other. It is hard but can be done. The anxiety you get from worrying about this kind of thing is indescribable. It causes me insomnia. I can go 3 days without sleep. Very stressful. It has aged me. I have no desire to eat. All I can think about is how I would give anything if they would not go through with this.

Do you have MS (I hope you don't, I wish no one had it!!!) or does your spouse have it? The treatment is not that bad!!!! It sucks when you get the chemo, but its not that bad. They have you on so much anti-biotics, viral, fungal medication that you'll be protected from infection. Its not like they wipe out your immune system and then tell you to go home. No, they have you under a microscope!!!!! Also, where are you getting your facts from??? This treatment stops the constant attack on your nervous system... For how long, no one knows, I hope forever. If you or your spouse want to try other treatments, God bless you and I hope it cures you! But please stop your BS, this forum is for please who want facts and not the BS your posting. Alot of people who went through the treatment don't post because they're enjoying life, which they should. I got the treatment about a year and half ago, and thank God I feel great! For how long, I don't know?? But I'll tell you this, I'm going to enjoy every second. Good luck and God bless you .....
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Postby happytown » Tue May 25, 2010 9:23 am

This is an awful disease.
Last edited by happytown on Wed May 26, 2010 12:47 am, edited 1 time in total.
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Postby Lyon » Tue May 25, 2010 12:26 pm

.
Last edited by Lyon on Sun Nov 20, 2011 8:39 pm, edited 1 time in total.
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Postby LR1234 » Tue May 25, 2010 12:35 pm

Happy: I am one of those people you speak of that would do anything to get rid of MS.
I am going to have children first (as some of these treatments can affect fertility) then I will try revimmune or stem cell therapy (whatever is more available to me)
I have had the CCSVI op and whilst I believe it solves one part of the puzzle that may be affecting some MSers I believe the immune system issues need to be addressed as well.
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Postby happytown » Sat May 29, 2010 2:38 pm

I have thought about it and done further research. If this is what works to help people, I am all for it. Different things work for different people. Just was really scared of the thought of losing them or them getting sicker. Im still going to be anxious of course, when you love someone you worry, but I just want them to do what they feel will help. I fully support their decision. I just want them to get better and feel better. Based on some more of the things I have read about, they are going to do great!
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Postby happytown » Mon Jun 14, 2010 12:34 pm

I have decided to get this treatment also. I am so excited I can hardly wait!
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