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I am taking snippets of postings from another listserv, I thought that the
info may be of interest:

At 05:40 PM 10/24/96 -0400, you wrote:
-Can anyone help or provide any information? I have Essential
-Thrombocythemia
-and now have developed an very painful reaction to the slightest chill.  It
-seems that unless I keep my legs, feet and hands at about 88degrees they
-develope spasms and unrelenting cramps.  I'd appreciate hearing from anyone
-who can throw some light on the problem.  So far my hemotologist has done
-some bloodwork which has not given us a clew as to what's going on.

Reply:

I would try a neuroligist on your condition.  It seems more up that line
(especially the cramps) than that of a blood condition.  I have
'polycythemia vera rubra(PV) and Restless Leg Syndrom (RLS) which I got at
different times.  PV you probably know about - it is an excess of red cells.
RLS is a condition where my legs will develop a "crawling" feeling that ends
in an uncontrolled twisting or jerking motion.  It is quite unpleasant and
seems to be brought about by sitting in soft, comfortable chairs.  About 8%
of the population of the US has it.  It is controlled through Sinemet - a
drug developed for Parkinson's disease which makes it cease for up to 8
hours.

I never saw a link between the two conditions nor did my hematologist.  Then
the Neuroligist that I have seen about the RLS told me that the RLS gets
worse in iron-deficient people.  Since the phelebotomies that I have for the
PV keep me iron deficient (to control the PV) they worsen the RLS.  Hence
the link.  But it took a neurologist to explain it.

I have no idea whether this has any bearing on your condition, but checking
with a neurologist (or asking your hematologist to do it) might not hurt.

Another reply:

How interesting!!!!  I have a child that is iron dieficient and is
having real bad leg spasms.  His legs hurt if he walks long distances or
if he does alot of jumping.  I wonder if it has anything to do with his
Essential Thrombocytosis.  He is on anagerlide and growth hormone
replacement therapy as well.

I will have to make a copy of this for my doctor.  Thanks for the post.





Margaret Tuchman(54yrs,dx1980)
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