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

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.

Great for you, Mariel..:hug:

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.

My platelets went to normal when I stopped smoking. :cool:

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

Hi, all. My platelets go up because of a genetic mutation to a cell line in the bone marrow.
Also red cells go up. This is called Polycythemia. It has been reclassified by World Health Organization as cancer, even though the cells are not malignant. So eating fish or regulating smoking would not probably help.
I used to be a light smoker 28 years ago, but that was long long before the MPN mutation.
Eddie, I have found I cannot eat fish, alas, as I would like to eat it, and used to eat it.
I grew up eating salmon 3 times a week in Seattle. But present day fish I don't tolerate, probably because I have porphyria and react to the high mercury content in present-day fish. I can tell from beginning symptoms a few hours after ingesting fish that something is not right--usually spasticity, pain in muscles. It's a subtle thing as I can get spasticity from other things as well.
300 platelet score is considered normal, I believe, Eddie. I forget the range but I'm pretty sure it goes up to 375 as normal high.
Lynn, there are some drugs to increase platelets in those who have Myelofibrosis, another manifestation of Myeloproliferative disorder. I have no idea if you have that or why your platelets are low, but a CBC from a hematologist might give some clues!

Hi Mariel

I have idiopathic thrombocytopenia purpura - it was identified during my first pregnancy (which was 19 years ago - long before MS came to visit - and didn't go home).

My options as far as I know, are 'roids, or removing my spleen (though that is not necessarily a guarantee of fixing it). I have seen a few haematologists over time. When I had my craniotomy, they put me on massive steroids because they kept crashing in the lead up to surgery (out of spite I am sure, because I wasn't scared enough already :eek:).

I am very grateful that they are as high as 90 now. That doesn't cause me any real dramas - other than a few extra bruises and nose bleeds.

It is really interesting that the autoimmune disorder (is porphyria autoimmune????) range is so diverse.

I really hope that p32 works for you. I can only imagine that the reverse of what I have is just as bad - if not worse.

Regards

Lyn