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Old 08-22-2012, 07:58 PM
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Default Stem cell transplant wise for those newly diagnosed?

This conversation came up on one of the HSCT Facebook pages and it got me thinking. On paper, this treatment is most effective early in the disease process (and safer and easier to recover from as those newly diagnosed tend to be less disabled). And if you ask those who have been through the procedure, most would say they wish they had gotten it done sooner (if possible, I would have). So logic says it would be smartest to treat those who have just heard the words "you have multiple sclerosis." There's just one problem.

I remember when I was diagnosed, and I'm pretty sure my reaction was not much different from most. I was a basket case, in a panic, and gobbling any and all information that might prevent me from the fate of a wheelchair. I wasn't thinking very logically—I was grasping at straws.

To make a decision of this magnitude—where the risk of death falls somewhere between going into space and climbing Mt Everest—at the most chaotic time of your life is potentially foolhardy. You are almost certainly not in a position to reasonably weigh risk.

That said, research away. Heck, start saving your cash. But hold tight. At this point, the decision is not one that's really debatable, as there are no facilities anywhere in the world (to my knowledge) that will treat MS this aggressively this early. But down the road as HSCT becomes safer and safer (with not only a lower risk of death but also a lower risk of lifelong complications), it would not shock me if HSCT became a first-line defense option for those newly diagnosed with multiple sclerosis....
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Old 08-28-2012, 04:46 AM
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My reaction wasn't panic at first but disbelief that there wasn't a solution. I scoured the great internet for answers. CCSVI seemed too easy, vitamins didn't click, nutrition and exercise seemed plausible(still very interested), stem cells was super sexy.

Two years to the day of my first MS symptom, I was getting a arm full of chemo. For me it was a shoot first ask questions later approach. There is a few places in the world ready to preform this procedure early in the disease.

Nobody knew I even had/have MS till I had to explain my whereabouts for 6 weeks and my lack of hair. It only shows up around the 1km running or 4km walk

At only 5 months out I can't really endorse this behavior but I can tell you I did recover fast. At 3 months out I joined crossfit gym and gave'r hell.

Thanks Dave for sharing all the info in your hsct quest. Good work on the latest video.

yaya


edit: I didn't go in 100% blind, I knew the risks . I held my breath for several months watching Stella going through the battle of her life.

Last edited by ya ya; 08-28-2012 at 10:07 AM. Reason: risk
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Old 08-29-2012, 11:52 AM
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Thanks ya ya. Two years is a good bit of time to wrap your head around this disease. Two months, though, is not, about the time when most folks start to make their first treatment decisions. Glad to hear it has worked well for you so far. Keep vigilant with your blood tests; infection risk is still high this early. And way to Crossfit!

Now, should I ask where you went? I'm guessing it had to be a place where regulations are a bit flexible. The major centers I know of (Germany, Israel, US) would have likely turned you away, but I could be wrong....
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Old 08-29-2012, 09:03 PM
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I went to Israel. Thanks for the reminder of the blood tests i'm a little overdue. Infection so far hasn't been an issue as of yet not even a sniffle.

I waited till my second attack, that made up my mind in a jiffy. MS took out my leg on a hiking trip in the mountains.
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Old 09-07-2012, 07:04 PM
andersimp andersimp is offline
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Default Stem Cells ...

In the beginning, i knew I was having a bad day when I would google
"medical tourism, stem cell, Costa Rica"
I adore Dave, hope research continues ...
He inspired me to do a Level 1 research trial at NIH in Bethesda MD --- for PPMS since none of current meds are approved for us.
That said a male friend of a friend just passesvaway from "complications from MS."
Dx after I was.
So not fair that the aggressive MS hits men hard .... And fast.
We need Stem Cells approved SOON.
Caitlin in ABQ
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Old 09-07-2012, 09:15 PM
AMFADVENTURES AMFADVENTURES is offline
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I agree with you 100% Caitlin, I've also had friends pass away from complications. HSCT could save lives.

Larry
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