So Keri and Me?

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

Postby RedPenguins » Wed Feb 04, 2009 1:09 am

Sandy....never heard of using a tap for that reason (during pregnancy). I'm afraid of needles/pain, etc...and big long sharp things being injected into sensitive places...doesn't sound pleasant to me - and I was never offered the spinal tap...no need for it - as my dx was way clinched without it! If I am to re-dose on HiCy, well, I may consider it - once I read more about the O-bands - and is it the case if you've had them once, you always have them... unless u are treated/cured? If that is the case, I might be willing to get tested - so that one day I may be able to say - "aha - I had them bands...and now none!" - but I don't know if that is the case.

One week from this moment, I will be on an airplane heading to Balti...for my quick 24hr turnaround trip. Fly in on redeye - leave LA at 10pm, arrive Balti 9am, see docs at 1pm, return flight 5pm to LA.
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Postby mommasan » Wed Feb 04, 2009 7:29 am

No, it was a totally different test- a blood test for a protein that is released by the placenta which signifies labor is impending. Nothing to do with MS at all.

I am just so affected by MS all the time that I would think about it even more if I knew I had the disease still lurking in my body. Right now my arms and hands are hard to use and my legs make every step a very conscious decision. It would be incredibly difficult for me to go thru HiCy again. It was a barbaric experience.
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Postby chrishasms » Wed Feb 04, 2009 9:07 am

Sandy it kills me to hear you say you are having such a bad go of it.

I was one of the lucky ones who showed immediate improvement and I am still holding on to what I have now.

Thursday I have my regular MRI, and, if I am active, I'm doing this again. I asked Doug and he said OK but he wants to see my MRI first.
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Postby mommasan » Wed Feb 04, 2009 9:25 am

Well, I have definitely had improvement from the treatment. But, my hands and arms were working a bit better in Sept. than now. I lost some function in my right hand years ago. I did regain most of what I lost in my hands and arms over the 2 years prior to HiCy, but seem to have lost a bit since Sept. The spasticity has been bad and my pain level has been really high in all my limbs. I am still walking around the house and down the driveway without my cane, and I naviage the stairs pretty well at the beginning of the day, and not so well at the end of the day. So, it has been worse, but I'd sure like it to be better.

sandy
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Postby Lyon » Wed Feb 04, 2009 1:38 pm

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Postby mommasan » Thu Feb 05, 2009 6:54 am

Thanks, Bob. When people ask me how I am, I have to say that I am stable. I do have to add, that when people see me for the first time since the treatment, they say that I look like a different person. I did gain a lot over the first 3 months. I couldn't even stand with my cane for more than a minute or 2 before HiCy, and as I have said, I believe I was 6 months away from a nursing home- I have absolutely no regrets about having had it.

But, as far as going for even a short walk with my cane or having anywhere near normal balance, or endurance with my arms and legs, it could be alot better. That's not the fault of HiCy, just the need for treatment for SPMS, and permanent damage from demylination. It seems to have taken research a long time to come along and even begin to address anything other than inflammation and active lesions.

Sandy[/i]
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