Hi Mrs D. New to this forum today. I think I have small fiber PN, and
would like to know how much B12 to take? Also what is P5P? And how
much of it? Thanks so much.
Susan
Quote:
It is very important for the newer members here to realize that THEY
THEMSELVES have to become an active part in their handling of PN. One cannot expect a doctor to do the same type of intervention for PN that they do for say, pneumonia. So people do expect something and when they get NOTHING, it seems very unfair and frightening.
Because there are so many types of PN...it is best to know what you are
dealing with. So diagnosis is important up to a point.
But for day to day management of pain/discomfort, and for suggestions to
assist and speed healing if possible, the medical community is very ineffective.
Rose (B12) and I have been here over 10 yrs now (on this and the other forum).
I brought P5P and magnets to the boards long long ago. I also brought essential fatty acids (omega-3) research and in some cases was even attacked for that! Now we see transfats removed from our food and omega-3s now added to eggs/mayo and peanutbutter! And I search constantly for more ideas and offer my experience with my own searching for relief.
Now I see P5P in an RX designed for neuropathy! How cool is that? (Metanx).
And the reverse, the methyfolate I recommended for years has been sequestered by Merck to on RX use (not an FDA move), just because they want to sell more and make more $$ on RX products! Metafolin was SO INEXPENSIVE OTC...it is a crime that this happened!
So over the past 10 yrs, alot has happened to PN patients. I only hope that the new members read our board and the stickies to learn what their options really are!
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