Posted by Tsukie
on 10/29/2005, 7:33 am
81.53.3.171
Hello,
I am 27 year old woman who suffer from a non-diagnosed disease since 2001, probably a rare endocrine disease. A pituitary MRI scan showed a RATHKE'S CLEFT CYST, but these is considered as non-pathological. However my disease include many hormonal problems (cf. symptoms and tests) and I am in great pain.
Then, if yourself or your close relations suffer from a similar symptoms ; if you have any ideas about that ; if you have advice : please contact me as quick as possible.
Symptoms : all the joints are painful and sometimes swell ; amenorrhoea ; galactorrhoea ; loss of body hair (pubes and armpits) ; constant weight gain (up to 10 lbs every month) even while I eat little (lack of appetite) ; severe abdominal pain ; constant failing eyes accompanied by swollen eyelids and pains inside my eyes and between the two eyes ; pale appearance ; purple stretch marks (arms, breasts, hips, behind knees and going up along thighs) ; darkened skin (groin, phalanxes, lips and corners) ; skin discoloration (mammary areolas) ; hot flashes ; excessive sweating and cold ; cold, dry and wrinkled hands ; high temperature (max. 38°5) ; prognathism and macroglossy (speech disorder : difficulties enunciating and chewing, failing voice) ; tiredness. (at the beginning of the illness : painful oedema of face ; serious cutaneous eruption on the hands, arms, forearms and around the neck [swelling and itching red plaques])
Tests : HLA B27 + ; dark spots on joints of fingers and knees (bone scintigraphy) ; osteoporosis, osteopenia and osteoarthritis (bone density test) ; gastric wall thickening [circular in shape] in the pyloric area (abdomen CT scan) ; ulcers, gastritis and purpura (endoscopy) ; presence of blood on the stools ; glaucoma and dry-eyed ; gonads [FSH-LH], oestrogen, testosterone, delta-4-androstenedione, dehydroepiandrosterone sulfate [DHEA-S]adrenocorticotrophic [ACTH] and cortisol deficiencies + prolactin [PRL], thyroid stimulating hormone [TSH] and gastrin increases (blood test) ; high 24hour urinary free cortisol [UFC], urinary aldosterone deficiency.
My only treatment is Hydrocortisone to supply cortisol deficiency which the cause is unknown. However my health get worse day by day ; my disease develop and handicap : pains are severe and permanents ; I am very tired and regularly feverish ; I don't even walk anymore because of my painful and puffy left feet ; I can't eat enough ; I have difficulties to ingest food (solid as liquid), to breath and to move because of severe abdominal pains. And with this rapid weight gain, I could easily and quickly be affected by a severe obesity and all his complications : I already gained 80 lbs in one and a half year ! My eyes are constantly failing : I have already changed my glasses several times within the space of some months.
I try to find quickly a solution because I cannot remain in this condition.
I thank in advance any person able to help me.
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