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janey

Anyone Else in the PPMI study?

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Just got accepted and reflecting on whether to participate. 

I am particularly concerned about exposure to radiation and spinal tap.

Insights?

Thank you,

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I couldn't do it.  For me the yearly spinal taps were too much.  If not for that would have probably joined.

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For what it's worth, I'm currently in a study that requires three spinal taps in a single month. That was pretty much my major anxiety about participating.

I've had two of the spinal taps so far--nothing close to as bad as I expected. A few pokes from the lidocaine injections, then some pressure (no pain) when the needle is inserted. No spinal headache after (none of the other patients my doctor is working with have had spinal headaches either). Some moderate low back pain after the first procedure, that resolved with ibuprofen. Insertion point a little tender for several days after.

Not sure about radiation exposure--is that from the DaTScan? If that's all, I'd say the risk there is vanishingly small. Many of us here have had DaTScan--thyroid is flooded by drinking a solution of non-radioactive iodine before the DaT injection, which prevents absorption of the radioactive iodine tracer. The iodine tastes pretty bad, and the hour-long scan is boring, but I actually preferred it to MRI (less noise and confinement).

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See if they will let you do it without the spinal tap if that is your concern. Although its pretty rare, I was horizontal for a week afterwords with terrible dizziness. I am still participating but without the spinal tap.

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Thank you Shop Guy and YItti! Yah, the radiation is now less of a concern after speaking to some folks. I am doing a bit more research on the spinal tap to quell my anxiety.

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