Chronic edema of the lower extremeties, chronic dry cough, bleeding under skin, photosensitivity, & migraines.

[BJJ81]

(Dictated to my son)

I am a 54 year old woman, 5'8" in height, 110 lbs. in weight, normal blood pressure, I suffer from asthma and seasonal allergies, but other than the symptoms and morphological findings I will detail below I am otherwise completely healthy according to my doctor(s) and how I feel. Things that have been ruled out include: Lupus, scleroderma, ARVD, renal problems, and heart failure.

Seven years ago I began to suffer from edema in my ankles and feet, preceded by severe pain (without swelling or any other signs) in the ankles, and followed by the appearance of reddish splotches all over the feet and ankles looking like bleeding under the skin. I began to suffer from a dry cough. These symptoms would come and go, and vary in severity over the last seven years. They have, in the last two years, become increasingly frequent and more pronounced. I also suffer from severe migraines with aura accompanied by photosensitivity, and exposure to sunlight seems to worsen all of my symptoms (including the cough and edema.)

Diagnostics I have had include pulmonary function tests, chest CTs, MRIs, EKG, blood panels (looking for anti-nuclear antibodies, ACE levels, and other autoimmune markers,) urine analysis, and an echocardiogram. I do not have printed copies of these, but can describe what I was told:

*My pulmonary function is normal and healthy.
*A dilated IVC without nominal collapse.
*"Stiffness" on one side of my heart (which side, or the significance of this was never explained to me.)
*My heart is healthy and functions normally according to the cardiologist I saw. He said my heart was in "perfect" condition apart from the aforementioned ambiguous "stiffness."
*Normal blood work results (No ANAs, no ACE abnormalities, nothing else.)
*Scattered subpleural nodules described to me as looking like "the very early stages of sarcoidosis or fibrosis."

[Kevin Pho, MD]

You have had a very comprehensive set of tests for the symptoms, ruling out many of the major diseases, including pulmonary, rheumatological and cardiac diseases. I probably can't think of further testing for the symptoms considering you have already had CTs and MRIs of the affected areas.

Skin lesions on the anterior surfaces of both legs may be suggestive of erythema nodosum.  There are a variety of diseases associated with this skin finding, including inflammatory bowel disease, pancreatitis, lupus, sarcoidosis, and Behcet's disease.  Obtaining a dermatology evaluation and/or a skin biopsy of the affected area can be considered.  

This options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[BJJ81]

Well, my pancreas is fine, and I forgot to mention that I had a colonoscopy and an esophageal endoscopy (I forget the exact term used in that instance,) both of which showed no abnormalities or sites of unusual inflammation in my digestive tract.

I've never had any of the symptoms of Behcet's such as mouth sores. I do have a lot of the symptoms of scleroderma, including esophageal dysmotility (I have had increasing difficulty swallowing,) patches of tighter or harder than normal skin, but no strictures or other abnormalities were found in the endoscopy, and those patches of skin are all in areas where the "bleeding under the skin" (which you said might be arythema nosodum) has faded leaving brownish liver colored stains. I also tested negative for anti-nuclear antibodies, which I understand is one of the diagnostics used in attempting to diagnose scleroderma and lupus, so my doctor seems satisfied that I don't have either of those or Behcet's.

I read a peer reviewed study indicating that the morphological changes indicative of ARVD can be mimicked by sarcoidosis with cardiac involvement, and my doctor suspected for a month or more that I had ARVD before seeing imaging results that disproved that hypothesis. The dilated IVC and "stiffness" in the right atrium and ventricle remain inexplicable.

Given all this, and the scattered sub-pleural nodules, I'm considering asking my doctor to test my vitamin D and calcium levels because at this point sarcoidosis, unlikely though it may be, seems as good an avenue to explore as any.

Thanks for your insights and prompt reply! It was time and money well spent. You are providing a valuable service here at a time when people are in ever greater need of direct communication with an increasingly distant (or so it seems) medical community. It is greatly appreciated. :)