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Here's more info on symptoms:

October 2002

Right after vasotec: involuntary eye twitching, fatigue, palpitations (90-100), then chest pain, physical panic attacks, night sweats. Went to hospital, they found fever, palpitations, high BP, but nothing else- adverse drug reaction. Got off vasotec. Then incredible pressure in the head, like an elastic band tightening around the head, sinus pressure, high BP, pressure in the chest- didn't feel like I could breathe. Had to start sleeping propped up- this releives the chest pressure a little. Got back on labetolol (which I was on before the vasotec), then it just feels like a big head cold- runny nose, sinus presure, head pressure. After 3 weeks I get a diagnosis of sinusitis- there is a little shift in WBC. The pressure in my head then "breaks" and travels down the left side of my body. I feel numb on the left side and chest pain big time. Get checked out, EKG, CT scan of the head, nothing. Doctor says it's a virus. Now I have ringing in the ears, sinus pressure, ulcerations and bleeding from the nose, spitting up blood,major weight loss (25lbs in a month and a half) sensitivity to light and sound, buzzing sensation throught the whole body, can hardly move, nausea, diarrhea. Only thing abnormal is high haptoglobin and blood in the stool. Ibuprofen makes it a little better, but it's still very bad. Swelling over left ribcage and into left upper quadrant- abdominal CT scan normal.

January 2003:

I get off labetolol, then gradually get off all the meds they put me on (ibuprofen, lorazepam, ambien). Now I am only on the antidepressant Lexapro but still feel sick as a dog although not depressed. However, there was definitely a bad reaction to labetolol going on because once I stopped it I felt better overall and the disease (whatever it is) goes into remission a little bit for a month.

Mid Feb 2003:

Another flare-up. Persistent nausea, muscle twitching, more weight loss, painful bruising on legs, pressure in the sinuses like you wouldn't beleive- constant pain. Also very painful temples.

March 2003

Doctor does Sed rate, thyroid, ANA again all negative.

April 2003:

I'm set up to see a dermatologist about the subcutaneous nodules around ribcage area (started when this first happened), then a rheumatologist. Hopefully someone will figure something out.

Biggest barriers to treatment:
- Doctors don't want to believe that vasotec had anything to do with this,
-they're hesitant to do a biopsy on one of these nodules even though the blood work hasn't told them much,
-I have to convince them that i'm sick!They are taking this way too lightly.

best case scenario: fibromyalgia, CFS, panniculitis without vasculitis

worst case scenario: Wegeners,or PAN (polyarteritis nodosa). 15% of Wegeners are not ANCA positive and ANCA was done when this first started, not recently. 20-40% PAN patients have normal sed rates. Maybe some kind of vasculitis anyway.

Give me any other ideas please. Self diagnosis is very risky but I seem to be the only one who cares about my own health, and with the big weight loss these doctors should have a high index of suspicion - that's my opinion, I welcome yours!