Re: moderator re coagulation

[Guest guest]

I have a problem I'd been unable to get diagnosed. Gradually

worsening varicose veins and associated worsening peripheral

neuropathy in both legs and arms which started at the same time. I've

gone to a number of neurologists who have been unable to find a cause

for the neuropathy (I am not diabetic but do sometimes get weak after

too much sugar, but that's been going on for years before this). They

tell me the varicose veins are nothing to worry about! It is now

difficult for me to sit because the pressure on the back of my legs

from sitting is painful and stops blood flow in my legs. Symptoms are

worse when I lie down to sleep, but when I am walking or moving about

I sometimes don't even notice them (so not PAD). I also I sometimes

get bright red swelling in the tips of my toes. I also have terribly

cold feet and calves most of the time and even when I get into bed

they don't warm up for hours. They are like ice....

This has been getting gradually worse for maybe 6-7 years and no one

has been able to diagnose it. I fear at some point serious permanent

damage to my legs..

The hypercoagulation connection intrigued me to post this since at

one time I was put on a large doses of coumadin and it didn't do a

thing to thin my blood. My tests were exactly the same before and

after and the doctors even accused me of not taking it. Apparently

they had never seen a zero reaction to it before even at high end doses.

Any help or suggestions or leads would be very much appreciated.

Thanks,

Edgar

[Moderator: The first item is to review:

http://www.lassesen.com/cfids/coagulation.htm

so you are aware of the vast number of factors, some are 'rare'. My wife was a

Protein S issue, a 1 in 20000 occurance. With the average MD having 390

patients, only 1 in 50 MDs will have a single patient with it.... So what

likely happened is simple: You did not match the expected (common) pattern. You

could attempt to get comprehensive testing of known GENETIC coagulation defects

(about 85% are known and testable -- so it may draw a zero. This does not mean

you are not hypercoagulated --- just fail to be detected by the known tests!).

The 2nd option is to get comprehensive PCR testing for all infections associated

with Syndrome/APS - see http://www.lassesen.com/cfids/infections.htm

Remember, some people are symptomless for some infections]