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Mirage's Story

I had to leave school in March of 2002 after having passed out a couple of times and having dizzy spells with some temporary loss of vision. At first, after an echocardiogram, we thought it was the result of a bicuspid aortic valve - as my blood pressure has been high, especially after activity. But, in Dec '02 we repeated the echo and found a tumour in the lower left ventricle which was removed a week later. And the surgeon says the valve is not tight enough to be causing the BP problems. So, I am now being tested for Cushing's and if the results come in positive, likely for Carney Complex as well.

Symptoms so far:

• *high BP
• *high cholesterol
• *striae
• *no weight gain/loss even on a diet and Lipitor
• *syncope and partial syncope, esp. as a result of exercise and sudden movement
• *thinning of the skin in some areas
• *cardiac myxoma, now removed
• *scoliosis
• *myopia
• *fatigue
• *depression/anxiety
• *partial facial paralysis on right side
• *memory/concentration loss
• --among possible others

Update Sunday May 11, 2003:

• *UFC came back as 48, overnight dex supp <1 (He's not wanting to do any more :( )
• *Tested positive for AntiDNA, so will be seeing someone for Lupus
• *Finally contacted the NIH instead of waiting for the Dr, so I hope to have an appointmaent soon
• *Contacted a lawyer about SSI, and will be getting a hearing in 6-12 months
• *Now, all of my immediate family, except father, has some similar symptoms
• ----Mom: chest pain, edema, pain in joints/side/muscles, high BP, high suger, unable to lose weight
• ----A_11: high BP
• ----J_11: frequent headaches, irritable
• ----C_19: striae starting to appear
• ----M_17: high BP, striae, sleeps all the time, irritable