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Old 04-22-2012, 03:13 PM #1
Mariel Mariel is offline
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Default I went to Mayo for p32 shot

Hi, I'm confused as to what the "MS Forum" is (where I posted yesterday, and there's no sign of my post here) and "Stumble Inn". What should I be googling to get onto the right forum? Book marks are not working since my son rearranged my computer.

I took p32 after thinking about it a long time. It is radioactive phosphorus, and it has knocked down my blood platelets about 3/5 in just a few weeks. I hope it stops knocking them down soon, as I am almost down to normal. Yesterday's reading was 470, just slightly above high normal.

This is touted as a way to stop potential stroke from high platelets causing clot. It can't be found everywhere, only place I know of is Mayo Scottsdale. It gives a slight chance of leukemia. It may need to be repeated. Local hematologists don't understand it.
But I tried all last year to take Chemo and had very bad side effects.

My feet are now almost pain free--could be the lessning of platelets caused the microvascular system to work better. However, feet are still numb, due to long standing peripheral neuropathy.

This treatment is for Polycythemia Vera, which I have in addition to Porphyria, and an old, old dx of MS which may or may not be accurate, no one knows. Also have Monoclonal Gammopathy.

Mariel
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EddieF (04-22-2012)
Old 04-22-2012, 03:27 PM #2
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Lightbulb

There is no post showing for you from yesterday.

Could it have been at BrainTalk? Sometimes people get confused post between the two.

The p32 sounds interesting.
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Old 04-22-2012, 03:58 PM #3
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Great for you, Mariel..
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Old 04-22-2012, 07:49 PM #4
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Mariel- thanks for sharing info. My platelet count "was" in the high 300's. I'm a pack/day smoker for 25 yrs.
I say "was" because now it's always in the high 200's ever since I ate fish every night for a month. I've changed nothing else.
Tell my nurses & dr where I get Tysabri- nurses give it a huh, dr shrugs it off. Try it before another shot.
Haddock, Salmon, Mahi, Basa with a little olive oil in non-stick pan. Season to liking. I'd love someone else to try to see if i'm onto something.
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Old 04-23-2012, 06:20 AM #5
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My platelets went to normal when I stopped smoking.
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Old 04-23-2012, 08:00 AM #6
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I would like the recipe for more platelets please. They are currently at 90 - which is amazingly high for me, but they have been down in the teens before. Made open brain surgery especially tricky.

I have been a non-smoker for the last five or so years, but it was when I was smoking that they got really low.

Lyn
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