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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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RedPenguins
 Post subject: bad/sad news
PostPosted: Thu Dec 11, 2008 12:55 am 
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So, it seems that I'm having an exacerbation. It isn't as horrific as my first one - but it's getting pretty bad. :cry:

Local neuro wants me to do a 5 day course of IVSM (at 500mg dose, instead of 1000).

I've been under some stress lately...and the weather just changed to cold out here. Not sure if that's part of it...but either way....I'm struggling with the symptoms.

I'm very sad and a little scared. But I realized that I can deal with an exacerbation from time to time even, if I don't have deterioration in between.

Has anyone else needed IVSM after hicy?

I left message for Dr. Kerr today - but he hasn't returned my call. I'm not even sure if it's okay to do IVSM...

~Keri
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pvns2005
 Post subject:
PostPosted: Thu Dec 11, 2008 11:13 am 
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How did your MRIs look?
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chrishasms
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PostPosted: Thu Dec 11, 2008 12:57 pm 
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Its normal to relapse into old symptoms. I agree with Chris. You need an MRI before you do any roids.

I relapsed into old symptoms all the time. Up until I actually MRI reactivated, I was not doing worse.

Unfortunately, Walking is getting tougher everyday. I can't wait until March to do this again.

Hang in Girlfriend!
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mommasan
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PostPosted: Thu Dec 11, 2008 2:36 pm 
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Sorry to hear this, Keri. As Chris says, it may not be an attack. I have been feeling like I have been having an attack, but the MRI showed no new lesions. My functioning seems to be decreasing.

HiCy has been followed by IVSM. Even in cases where the MRI showed no new lesions or enhancement, Gladstone documented using them for symptoms relief. Kerr documented using them for an attack for a HiCy patient as well.

Are they old symptoms, or new ones?

Sandy

BTW does anyone know how the original HiCy'ers are doing?
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RedPenguins
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PostPosted: Thu Dec 11, 2008 3:58 pm 
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Hi Everyone,

Dr. Hammond called me this morning and said I should not wait till end of December to have MRI and to go for blood work/uninalysis, too.

So, I did labs today and tomorrow I will go for my MRI and have a STAT reading on it.

Now I sit and wait for lab results....sitting here praying it is an infection!! The guy in the lab was shocked when I told him I was so hoping my results came back funky. I tried to explain that if they came back with signs of infection, it may mean the holes in my brain aren't acting up. ha ha.

I've had a very stressful week....and so I'm really hoping it is nothing more than a pseudo-exacerbation. Of course, that doesn't make it much better in terms of the fact that I still have symptoms....but if my good ole brain is cooperating, then I will be thrilled!

Most of my current symptoms are old ones revisiting...but there is the addition of numbness/tingling that I didn't have before. Part of my body
"fall asleep" or get numb or have pins and needles. I don't like it!!

It's somewhat hard to think about the fact that if/when I get infections I will have to deal with the MS....but I guess that just means I need to take the best care of myself. I much preferred it when I was "forgetting" that I had MS, as life was resuming to normal the last 5 months.

So, tomorrow afternoon I will have results of the MRI....will keep fingers crossed until then...

~Keri
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mommasan
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PostPosted: Thu Dec 11, 2008 4:43 pm 
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Please let us know, Keri. It could also be hormonal. Most women, myself included, feel much worse when the progesterone peaks at the end of the cycle, only to get back to baseline when the cycle begins. Too much unnecessary info for the men out there.

Sandy
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Jamie
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PostPosted: Thu Dec 11, 2008 8:30 pm 
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Mel's had one or two of these events and they always end up as psuedo's.
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MaggieMae
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PostPosted: Fri Dec 12, 2008 12:44 pm 
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I guess nothing is a sure thing. So many highs and lows. :(
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Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

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