Question About Pooling!

[pulp]

Hey guys. I saw the fifth PCP in a row now today regarding the stuff that's going on. One thing that i have is that my legs feel very full and go red when I'm upright. If I stand still they take on this kind of coloring:

I showed her this picture, this was after I had one foot on the ground some 2-3 minutes and other resting horizontally. PCP told me it's normal. But is it, really? In my age - I'm 25 and have never had any issue like this before and I work on my feet walking around. My legs had never felt stuffy before except when I was pregnant and they were filled with fluid. Does this kind of discoloring happen generally too when "healthy" people stand still? I mean none of my friends had never even experienced something like this. She had me stand still some minutes for bp-takes and I was barefoot so she saw my feet turn blue but said it was normal since I wasn't moving around. Maybe I've gotten something wrong but I thought the healthy body handled being upright by contracting veins so the blood went up anyway, can't recall ever seeing my feet (prior to getting ill) or anyone elses feet turn this color.

[MomtoGiuliana]

I think you need another opinion! This is a typical symptom in POTS due to pooling.

I can't remember if this dr has already diagnosed you with POTS or you have a diagnosis?

Importantly, if you are feeling poorly, you need a doctor who can treat you.

I hope you get the help you need soon!

[pulp]

Thanks for the reply Momto! I thought it was a typical symptom and if this isn't pooling then I'm not sure what pooling is. I don't have a diagnosis but fighting to get one. PCP said she would speak with her superior and call me back in a week.. got a feeling it will be the same thing like "test-results are normal, sorry nothing wrong with you here's the number to psych". Told her my psychiatric doctor thinks this is somatic though, maybe that'll help.

[micheller]

My feet definitely change color if I'm standing too long. When I had my TTT they turned a lovely shade of dark purple and were cold. I have the 'stuffy' feeling too, if it gets bad enough my legs from below the knee ache and hurt. Normally I can see the tendons in my feet but when they pool, they disappear and I have no ankles. I have to put my feet way up, lay on the couch flat with my feet on pillows on the arm of the couch but as soon as I get up it comes back.

[pulp]

Yeah I think my legs look swollen too if I'm upright long enough! I just got so surprised when the doctor said it was normal - I mean does this happen to healthy people? I've seen it in the elderly I care for but they usually have damaged veins and so on. What does your pooling look like?

[brethor9]

Pulp! my legs totally change colour like that and I was told it is mottling/ blood pooling and is part of POTS/Dysautonomia with Hypovolemia....and that was the diagnosis through an autonomic specialist....I think you need to get another opinion....I think the only time you see it in normal people are the elderly because it is related to poor circulation....

Bren

[HopeSprings]

Let's see if this link works. If you scroll down there is a picture of a healthy person's legs and one of a POTS person's legs.

http://www.google.com/imgres?imgurl=http://cogprints.org/4802/1/raj2.jpg&imgrefurl=http://cogprints.org/4802/1/raj.htm&usg=__2VGlFyy0C7Yfe0L_pnbVQg9b77o=&h=450&w=600&sz=158&hl=en&start=3&sig2=R6_h5GS3KpGqKtRnqG0irw&zoom=1&tbnid=GnwWP8Sqgj1L1M:&tbnh=101&tbnw=135&ei=0V0QT7jSJKju0gHlsICmAw&prev=/search%3Fq%3Dpots%2Bsyndrome%2Bfeet%2Bdiscoloration%26um%3D1%26hl%3Den%26sa%3DN%26gbv%3D2%26tbm%3Disch&um=1&itbs=1

[Trach]

I hear your pain. My older sister is a well respected doctor. Prior to her retirement she taught at a top rated medical school and saw patients at a highly regarded hospital. Yet, she really never accepted my diagnosis. When I showed her my red/purple legs/feet her comment was "lots of people do that". (my sister is a pulmonary doctor). I had emailed her Dr. Grubb's and Dr. Raj's literature to no avail.

It wasn't until Jane Brody wrote the article in the New York Times a few months ago about POTS that my sister finally accepted the diagnosis is real. Go figure.

I hope you can find another doctor. It is impossible to convince close minded doctors.

[pulp]

Bren, that makes me feel more certain of myself, thanks! I really wonder why this doctor told me it was normal - I gotta admit to feeling a bit like 'doh, I finally thought I had something I could show them that's not normal AND visible, when she said well that happens to everyone who stands still I just went silent. I'm going through doctors faster than I'm going through my underwear. I did tell her about POTS and she said she would read about it until next week, I really hope she'll keep her word about that, there's not many doctors left to see around here.

~Naomi~ yes! I've seen that picture before. I actually didn't think I had pooling until I compared my legs by letting one rest/putting one down and then the difference was as striking as in the photo.

Trach that's just so sad! My family didn't really take me seriously until I showed them my discoloured legs, now they are worried and wondering what the **** is actually going on. I never heard about cyanotic legs happening from just standing /in a healthy person) when I did my anatomy/patophys classes, I wonder where the doctor I met learned that.

[Katybug]

pulp,

Similar to Bren's docs, my POTS neuro specifically checks for the changes in the color of my legs when he does our 10 min. poor man's TTT at each visit. He also noted the color changes throughout my formal 45 minute TTT. He even notes this symptom specifically in his dictated notes that he sent to my other doctors as a specific indicator of the pooling.

Hope you have some better luck with the docs soon.

Katie

[julie_2girls]

That is the first test Dr. abdallah did on my daughter. he had her stand up takes shoes and socks off and i stood by her with my shoes and socks off (i was the "normal" subject). within 5- 10 minutes her feet looked like yours and her pupils got bigger. he pointed this out and said the brain is sensing not enough blood back to heart and sends out adrenaline to get heart pumping faster, that is why pupils dilate. he said look how white her face is. meanwhile my 47 y/o feet stayed normal color. he also had her put one arm up over her head and then bring it down to compare to other arm. the arm would be normal in color overhead but once brought down it would change to darker color from pooling. your primary does NOT know what they are talking about!!!!!!!!!! he then examined my dgtr lying down and her face color warmed up. he pointed out all the signs to us. it makes so much sense. It is amazing how many doctors have looked at my daughter and then once you see a ANS specialist it is easily picked up. You may have to go out of state to get confirmation.

[Clairefmartin]

I'm going to ditto everyone and say find a new doctor!!!

We really need an educational pamphlet put out by Mayo or Vandi or Dr. Grubb or something standardized to take to these doctors! I wonder if that exists? I print out medical journal stuff to bring to my appointments - but it would be nice to have a standardized one with references listed and contact numbers.

I feel your pain - I usually get blank stares, and I have a Dx Good luck and keep trying!!!

[janiedelite]

Here's a link to DINET's dysautonomia brochure:

http://dinet.org/images/DINETservicesbrochure2.pdf

[pulp]

Thanks for the feedback guys!! I thought it was so messed up that she told me it was normal. I don't know how to reply to that - she's supposed to call on friday and I have a feeling she's allready made her mind up regarding me and my symptoms. Blood samples I've given have all been normal so I should be healthy.. as if I didn't know that, I wish I was healthy!!