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Laura's Story...

Beginning November 2002 I noticed my face and neck were fatter every morning. That was the beginning of a nightmare that is still going on. I went through infinite tests and doctors during two months. No clue what was going on with me. Probably my ‘moonface’ was due to some kind of allergy, my swollen leg to blood problems, my fatigue and other weird symptoms were just psychosomatic.

In December 2002, I was unable to walk alone in the street as I started falling down at any time as if I was too heavy for my legs. Finally, on January the first, y husband was so scared seeing how inflated and weak I was that he took me to the hospital. Tests showed my potassium was extremely low so they kept me in the hospital to do more tests.

Finally, doctors told me I had Cushing caused by an ectopic tumor. Since then I’ve had three operations and several tests to find out where the tumor is located but no success. Even though at the beginning treatment with Ketoconazol and metapirona got good results it did not last for long and doctors advised me to remove both adrenal glands. I resisted as much as I could as I rejected the idea of removing something that was apparently healthy but my conditions got worst. Specially because since I started taking ketoconazol and metapirona, every 8 days I woke up really dizzy, with nausea, vomits and feeling photophobia. Finally, I gave up resisting and had the BLA.

For one year my life improved amazingly. Still I was weak, had some memory problems and remained fat but I thought that was due to the long illness and to the fact I was eating too much. During the first 12 months I only had three crises: I call crisis to those days that without apparently any reason I wake up terribly dizzy, with nausea, vomit anything that gets into my mouth –medicines included- and suffering from photophobia as well. As I cannot have my medicine doses during crisis the only solution is going to the ER Hospital service were I have to stay for at least 4 or 5 days since I recover completely. Still the situation was bearable the first year. But since January my crises happen every three or four weeks (When my only daughter had her first son I happened to be at the room beside in the same hospital). Needless to say: I’m depressed, I feel terribly weak, even during ‘good’ days, I keep eating too much, I have problems with my memory and concentration (or so says my family as I do not really realise), …

Luckily I am already retired. My husband and daughter love me and support me completely. Actually I asked my daughter to help me, as I don’t speak English at all. I’m finding this web site extremely helpful and I’m just hoping to find some people having the same kind of crises I have to know if doctors have found an answer. Even though I’m quite happy with the way my doctors are following my case, still I feel they have no experience enough on this illness or at least they have no answer to my particular problem. I am worried because I do not know how long my body would stand entering the hospital every three weeks to have a huge dose of cortisol that seems to be the only way to make me feel better.

Thanks for having the idea to build this site!
(We hope our English will be good enough for anyone who reads it to understand)

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