Anticardiolipin positive...and severe chest/extremity/neck pain

[Chere__0]

  I was diagnosed anticardiolipin antibody positive approximately 2 years ago.  I've been on a chronic coumadin therapy ever since at 7 1/2 mg M/W/F and 5 mg T/TH/SA/SUN.  My levels go up and down every 2 week test with nothing consistent.  I've had extreme swelling and edema in my arms, legs and feet for quite a while now.  My internist treats this with furosemide and potassium.  The swelling in my ankles leaves huge tire rings at the base of my ankle and the top of my foot looks like a huge pillow, and on my shins I have red blotchy, shiny areas that are very warm to the touch.  I'm concerned this might be clotting...what do you think?  Until I read an article in your forum, I wasn't even sure what my condition was all about.  I've had what I believe were TIA's, which included stuttering, slurring, darkened vision (I have optic neuritis and am being tested for MS).  They found a high signal area that has been increasing in size slightly over 4 MRI's.  Here is my current problem.  My arms and legs are killing me and I have little lumps under the skin on my forearms.  After a surgery in 1990 I was on heparin when I developed a brachial clot and subclavial clot and was on the heparin IV for 2 weeks.  I went untreated up until 2 years ago when the coumadin therapy began.  I have been having severe pains in the upper left portion of my chest and shoulder that throb.  I have difficulty sleeping and raising that arm up above shoulder level without excruciating pain.  I have been feeling pain from my left arm up into my neck, but each trip to urgent care reveals no heart problems.  I am extremely overweight (380+) and know what to look for in case of a heart attack.  I do not have sweats or gripping pain in my chest...just localized to my left side.  I know when my blood is too thick because the pain gets really bad in all extremities.  Can you help me please?  I don't know enough about this condition to know where to turn to next.  I would really appreciate any help you can provide.  Thank you!
---------------------------------------------------------------------------------------------------------------------------------
Dear Cheree
From the information in your letter, I cannot determine what your diagnosis is. The anticardiolipin antibody can predispose to clotting, and this could lead to TIAs. The signal abnormality points more to MS. As far as your pains, you state that the doctors you have seen do not think it is your heart. I cannot say from a distance. However, in terms of your cardiac health, it would be advisable to lose weight. Your current weight predisposes you to heart disease. It also makes cardiac catheterizations and cardiac surgery much more risky, if you ever need those procedures.
You may want to see a neurologist, if you haven't already, to evaluate the TIAs and possible MS. You might also consider seeing a rheumatologist, a specialist in aches and pains involving the joints.
I hope this is useful. Good luck. Feel free to write back with further questions.
If you wish to be evaluated here at the Cleveland Clinic, please call 1-800-CCF-CARE for an appointment with a cardiologist at desk F15. Information provided in the Heart Forum is for general purposes only. Specific diagnoses and therapies can only be provided by your doctor.