Saturday, June 6, 2009

Verla (verlamom), Undiagnosed bio

My oldest daughter, Denise, has symptoms which I think are cushing's syndrome.

She has had asthma since an 8 yr. old child (now 45) with various inhalers, nebulizers, & bronchodilators & intermittent cortisone bursts of treatment--usually 4-6 months apart; at times a year between. For the past 4-5 yrs. has used Advair inhaler which was started at low dose & dose increased to currently 500/50 (high dose) twice a day for control.

Adrenalin for emergency use has not worked for her since she was 9 or 10. It seems her doseage need for solu-medrol & prednisone has increased when acute episodes occur--the last asthmatic episode occurred in Feb. 2009 when she needed a solu-medrol 100mg injection & prednisone 80mg in slowly tapering off doses. She does not regularly take any oral or injectable cortisone--just the inhaler of Advair.

She has slowly been gaining weight during the past year, but in the past 2-3 months has gained 40#, particularly in the upper torso area. Her breasts are huge, she has a fatty area at the back & neck, her face is rounded with swelling at temple areas because she has trouble with her glasses getting over that area (usually wears contacts as her eyesight is extremely near-sighted--had bi-focals when 8 yrs. old). Her eyesight has been getting progressively worse in the past month & in the last week has gotten extremely light sensitive, eyes swollen nearly half-shut, blurring, & peripheral vision not good. Saw an optomotrist Fri. June 5, 2009 & will be getting new contacts Mon. & using eye drops for irritation of one eye. Wearing dark glasses all the time in addition to contacts. Has headaches constantly, over the past 3-4 weeks have been getting worse--not migraine she says, but much like increased intracranial pressure like she had following a myelogram 8-10 yrs. ago (developed a spinal fluid leak & lost so much fluid that her brain stem was pulling down into the foramen--received a blood patch & it then sealed & things became normal).

She's had 4 back surgeries with 2 of them being fusions, diagnosed with PCOS with emergency surgery for a huge cyst which ruptured as they opened her abdomen; hysterectomy for endometriosis, etc. about 4 yrs. ago.

She has extreme fatigue--is an RN who generally loves her work but is having a very hard time getting up in the morning & can sleep at any time. Does sleep at night. She says that her thought processes are not as quick & feels "mentally slow." Has bruising & bleeds easily, occ. flushed face, stretch marks but not colored.

She had seen 3 different GP's--got in to see her PCP finally who at least listened to her. He ordered an MRI of pituitary on May 30, 2009 which was read as normal as well as a lot of blood tests. She also has an ovarian ultrasound & a low dose dexamethasone suppression test--so far all the tests have been in the "normal" range. At present no salivary cortisol or 24-hr. urine test done & no adrenal scan done. Thyroid testing has shown considerable change (TSH from 4.5 about 8 months ago to 1.8 about 2 wks. ago).

Was referred to endocrinologist who she saw on June 3, 2009 who did little to nothing from my perspective--drew more blood (if this was the 1700's she should be well with the "blood letting"). He told her the lab wouldn't come back for a week--He was in Lincoln, NE & so is the lab--don't know why it takes so long. He prescribed premarin without telling her & it was simple at the pharmacy when she got her eye drops yesterday. Apparently, in answer to a question, she told him she sweat a lot. He's not on my list of preferred doctors. One of the early doctors, not her PCP, told her to go home & lose weight & have a sleep study; another has referred her to a rheumatologist.

We are very worried about the escalation of the symptoms & the severity of her headaches & vision. We are thinking of asking for a referral to the Mayo Clinic--we hope there are good endocrinologists/Cushings/whatever doctors there. I have found that a Dr. Young is a specialist in Cushings. Denise's mood varied from thinking she's a hypochondriac when the tests come back negative & knowing that something is dreadfully wrong. She also has felt that she might faint at times with a kind of dizziness.

Any advice would be appreciated. Thanks.

Email Verla

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