Yes, I am a M...S!

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Yes, I am a M...S!

Postby jrosey » Mon Jul 19, 2010 1:19 pm

So the Avonex didn't work, and now the copaxone doesn't seem to do much either. Was just working up the nerve to try Tysabri, but figured I'd take advantage of a JC virus test through a trial, to be more confident about NOT DYING from PML. Today's news: JC positive. So now I wait for a useful (and not deadly) pill to hit the market.
The good news? I am at work, and never miss a full day due to MS. I can still get from point A to B on these legs, over the quicksand and the invisible sinkholes that form only for my right foot. I can still pick up my daughter for a hug and chase her bike when I am afraid she is losing control of it. I can still laugh and love and live with my wife. I can still take care of myself and my family. I can still cook and then clean the kitchen afterward, (but not immediately after.) NO sexual dysfunction!
And this all is NOT CANCER. I do not have to wonder if I will be here in 10 yrs (b/c of MS), just whether I will be able to dance. Finally, it has not turned my attention inward- I continue to focus my life on helping others. And still get to see people of all stripes in much worse situations than mine, every day. Perspective is the gift that allows me to live with this crappy disease.
Jeff in North Carolina, USA
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Postby jimmylegs » Mon Jul 19, 2010 4:00 pm

welcome to TIMS jr, sounds like you have a great attitude!

i moderate here and my big focus is nutritional strategy so if you want to ask any questions just pm me or post under the diet or natural approach topics.

you might want to jump into the CCSVI forum as well. although the JC positive throws a different spin on your case.

anyway, happy reading!
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby silverbirch » Wed Jul 21, 2010 5:59 am

Whats JC positive
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Postby Algis » Wed Jul 21, 2010 6:18 am

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Postby L » Wed Jul 21, 2010 4:49 pm

silverbirch wrote:Whats JC positive

Unless you're on Tysabri or Rituximab it won't be a problem. If you are, and you are one of the 70% of the population infected with JC then you have a miniscule chance of contracting PML, a horrific brain virus. Imagine MS but insatiable, that's PML.
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Postby silverbirch » Thu Jul 22, 2010 10:47 am

Cheers for that L your very helpfull xx

As per our previous conversations I have just been DX with MS 12 months bla bla to date no DMD or steriods just asprin (baby asprin) for which I put myself on and Ive informed gp/neuro funny -it took away that cold foot.... I dont suffer fatigue mobility at 98% legs can go wobbley sencerory odd im ok when its got 4 walls/roof

In my wisdom I want to read all procedure reports good/bad look into underlyeing conditions that may prove to be a problem so far ive ruled out thyroid by bloods/screening , diabetis , lupus. please advise if you think ive left out anything

I want CCSVI treatment but do not want stents at the minute... but want a lorry load of blood thinners - but that said I am mindfull of their effects that again said I want a lorry load ha,ha
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