red hands, purple feet, knees hurt.. need help

[Nancy480]

My daughter who is now 20 has been seen by several Dr.'s for her purple feet, red gloved hands that hurt at times. They have ruled out Reynauds (Which the Dr. thought for sure it was) they have ruled out autoimune disorders.Her arterial doppler ultrasound showed weak pulse in two areas. So the internal Medicine doctor who ordered the tests said go see a Heart Dr.. We made an appointment and That Dr. and he said sorry I don't deal with this problem and had no advice for us on who to see. It has been 2 years now and My Daughter is worse off. She has developed pain in her legs especially in her knees. she complains of pain mostly behind her knees. She has seen a knee specialist they see inflamed cartilage in both knees. She relieves the redness , pain and swelling in her hands by raising her arms. Her feet turn purple, Symptoms worsen in winter.  A friend said she might have Atherosclerosis. She can hardly walk for any distance or stand without pain. Any help is appreciated on who to see about this.Thanks

[mstanfordrn42]

Bless her heart to be only 20 with so many problems!!  (Yes, I am southern with my "bless her heart!!!")  I am only an OB nurse but I will give you the only advice I know.  I don't understand the cardiologist.  Why would you say that you don't deal with that??  I would call around and find one that would see her and talk with their nurses first to explain what is going on.  Sometimes nurses give better advice than the docs!!!  Not that we know more, just a different view and we spend more time with the patients.  But I definitely think its circulatory.

[Dr. Kokil Mathur]

Hi
Welcome to the MedHelp forum!
I am sorry to hear about your daughter. Since there is pain and swelling in the arm and discoloration, your daughter could be having thoracic outlet syndrome (TOS). In this there is pressure on the brachial plexus (bundle of nerves and blood vessels in the armpit) and the subclavian artery and this can compress or irritate these structures and cause symptoms such as abnormal sensation, cold extremity, claudication (pain), and lymphedema (swelling of lymph channels), discoloration (bluish or red if veins are pressed) in the involved extremity. Usually this affects only the upper limbs or arms. Since the symptoms are relieved by raising the arm (which aggravates the symptoms in TOS), there is a chance of extra rib or cervical rib or a cervical deformity causing the pressure symptoms which are quite close in resemblance to TOS. The compression could be at a point before the brachial plexus. Maybe there is pressure on the inferior venacava or there is atherosclerosis of arteries of legs or deep vein thrombosis. Since dopplar was inconclusive or showed weak pulse which could not be followed up, an angiogram should be done. A cardiothoracic surgeon is the person you should be consulting.
I am really sorry but beyond this at this point I cannot think of anything else. Do discuss this with your daughter’s doctor and see what he thinks. Take care!