Discussions By Condition: I cannot get a diagnosis.

Do I have Lupus or what else might it be?

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Anonymous
  • June 10, 2007
  • 08:11 AM

I have been going through a medical nightmare for over two years now. What, at first, seemed like a separate and random occurrence of symptoms has become too prolonged after symptom-specific "treatment" and too consistent to be considered separate and random any longer. However, I am having an impossible time convincing the specialists and, especially my primary care physician, that there is a bigger picture behind my condition(s). I should say that I have no medical insurance and I have accrued over a half million dollars in medical bills. Since I have no insurance, I am a patient at a University Hospital where all/most uninsured people in my city go for medical care. Only two times in over two years has anyone expressed a belief that I have an undiagnosed causation behind my symptoms and those two people were both interns who were promptly censored by the attending physicians!

This began in January of 2005 with a steadily worsening pain in my left leg. On the third day of uninterrupted pain it approached an unbearable degree, I was unable to go to work, and I became convinced that it wasn't going to dissipate of its own accord. I went to the ER at the University Hospital and was diagnosed with a blood clot. The clot puzzled the doctors since I had not been on any 12 hour plane rides or cross-country car rides, I was only 34 years old, and was physically active on a consistent basis. I was treated for the clot with two different medications.

Six months later, I began to have syncope episodes which occurred at the rate of about 1 a month. It wasn't until the third episode that I became concerned and started going to the emergency room. After my fifth syncope and my third visit to the ER, I was told very nonchalantly by an apparently disinterested intern that I was having "panic attacks." I immediately questioned this diagnosis and was a bit indignant at the manner in which I was told as the man seemed to be fixing his attention elsewhere while he informed me of the diagnosis. I was not experiencing any fight-or-flight feelings, no sweating, and no psychological discomfort before passing out. It was simply a matter of being conscious one second and the next thing I knew I was coming to in a total cloud of confusion.

The very next incident, December 22nd of 2005, had me fall from a standing position. I am 6'3" tall and I landed on my forehead with the full falling weight of 220 lbs. I was unconscious for three days and spent almost 30 days of late December and January 2006 in the hospital. During that time I had countless tests, saw six different specialists, and developed almost ten blood clots from my extended time in the hospital bed.

Since February of 2006 I have had a head surgery to remove dried blood from the inside of my skull, I have had an ablation to keep my heart from racing to more than 200 b/p/m in the snap of a finger (this being the actual cause of my syncope), and was given a pacemaker due to being one of the lucky (haha) 5% of patients whose heart reacts adversely to an ablation and slows down. My heart stopped for 10 seconds in April 2006 while I lay in the ER after my seventh and final syncope. I have also been indefinitely prescribed Coumadin due to the diagnosis of a blood condition called Lupus anticoagulation disorder which was the factor in my blood clotting "talent" (haha- sorry trying to keep a sense of humor about all of this.)

Since being given the pacemaker I have not had any syncope episodes. Nor have I had any blood clots since being under the watchful eye of the Coumadin Clinic and having my INR measured on a regular periodic basis.

However, I have not been able to get my primary care physician at the hospital to take my other complaints seriously. This grew to such a frustrating level that I requested a new PCP. Here is an excerpt of an email I sent to a good friend in September 2006:

"It seems that University Hospital, the doctors, all think I am healthy- bodily healthy. Yet I am chronically tired, I have strange muscle soreness, daylight hurts my eyes, I have acne or rashes on my back, head, and face for the first time in years, there is a ringing in my ears, my feet burn, I can only read a few pages of my books without being mentally tired, my hands and feet tingle often when I am sitting down, and I keep thinking that I am going to attack my latest writing project the way I have always attacked writing projects but it all seems so burdensome. My mind is constantly drawn to consider the visual hallucinations I was experiencing during the time I was off of my anti-depressant and what that means with regards to how I would be in a natural state.
It becomes overwhelming to continue to voice these issues at the hospital when they seem convinced that I am "recovered." I don't want to be dependent or to appear to be prolonging all of what I am experiencing but I feel accused of doing just that. I would trade all that I have to be as I was a year ago."

Since that email was sent seven months ago: I have developed a consistent pain in my toes which had previously been periodic; I have cramps in my calves each and every morning when I wake up; my hands and feet tingle whenever I sit even a few minutes and they are prone to falling asleep whenever I sit for extended periods; my ankles are swollen and full of vericose veins, and I get lightheaded very frequently when standing up.

Over a year ago, I complained to my first PCP about a pain in my right hip where my leg meets my torso. He discarded the pain as he did almost all of my concerns (he told me in the middle months of 2006 that the pain in my toes that is still there "will go away"- seriously). Now a year later, I visited the ER last week due to the sharp and sometimes violent pain which has consistently increased in my hip and they tell me that I have an extremely rare condition called "femoral acetabular impingement syndrome" in which the hip socket and the femur bone are mis-sized for each other. Now I get to see the one specialist I had managed to dodge at the Physician's Associate Care Building- the orthopedic surgeon! That means the entire list of doctors in my drama now includes: neurologist, neurosurgeon, cardiologist, psychiatrist, psychologist, pharmacologist, primary care physician, hematologist, and the aforementioned and forthcoming orthopedic surgeon.

In addition to the already noted symptoms, I am having muscle aches in both legs and my right arm. (Hurray for the left arm!) I am having chest pains which feel like a dull heartburn but it is more pervasive in location and runs beneath both breasts and down to the bottom of my sternum. I have had a headache now for over a month. Finally, in the last week I have begun to have a sharp pain in my upper right abdomen where the bottom on my liver or my gall bladder is located.

Due to the Lupus anticoagulation blood disorder, I have read several articles on Lupus and have matched several of my symptoms to this systemic disease. It is also widely recognized as a very difficult diagnosis due to the fluctuations in, and pervasive nature of, the symptoms. I am resisting self-diagnosis but, as I said, the doctors that I am seeing continue to tell me that each roadblock in my path to recovery is its own condition. But what are the chances that I should have three unrelated and "very rare" medical conditions all strike within the same 24 month period? Not to mention that the condition behind complaints I verbalized over a year ago were consciously ignored or dismissed and, now, the level of damage and subsequent solution has been maximized. I may end up having to have hip replacement or some other major surgery to an area that, if addressed a year ago, may have been dealt with in a less traumatic fashion...

Any advice or help from someone with knowledge of Lupus or any other malady that sounds like it might include the totality of what I'm experiencing would be very much appreciated.

Symptoms at a glance:
swollen ankles
Lupus anticoagulation blood disorder
calf cramps

pervasive muscle pain
constant head ache
chest constriction/pain
sharp pain near liver/gall blader

lightheadedness at moment of standing up

heart arrythmia/syncope
siezure (most likely from head injury and bleeding in brain)
large skin rash on front left calf
tingling hands and fingers
dull pain in toes
hands and feet fall asleep after long periods of sitting (very aggravated sitting for movies in cool theatres or in air-conditioned coffee houses)
femoral acetabular impingement syndrome

(I think that covers them all.)

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