I'm 25 years old, I live in Romania. I have a very consistent medical history that dates back to when I was 9. It is that long that I don't have a clear diagnosis, and things got so worse that the only option left is resignation in the face of death. But, with a last hope, I write here maybe I will get a diagnosis. At 9 years old I had purpura, with fever. It is then that I accidentally found a high level of bilirubin, which persisted, increasing even to 4 times the normal level. Then back pain, a hand paralyzed for 6 months, and frequent terticolis. At 14, swallowing problems emerged, and a violent cough which is present to this day, causing so many nights without sleep. Since 3 years ago it got worse, with weird hormonal problems (prolactin 4 times the normal level, estradiol levels same as at postmenopausal period), repetitive infections (candidiasis, toxocara, pathogen Staphylococcus aureus, and others) which have been treated, cardiac arrhythmias (all types), neurological symptoms, irritable bowel. All these are present only sometimes, this is the weirdest part. I lost 11kg in less than a year, although I eat alot (right now I have 45kg and 1.75m height). Even so, B12 and folic acid are normal. Blood tests normal, with slight rises in eosinophilia. Usually low triglycerides and cholesterol. Deshidratation level rises very high, although a drink 3-4 liters of water a day. Glucose level is normal, but I feel nausea when eating sweets. I cannot do physical effort at all due to the respiratory problems. This cycle is not regular, but I'm not amenorrhoeic.
The disease has a kind of a cycle: belly, hearth, head, neck which repeat itself at 2 or 3 weeks intervals. What tortures me the most is the following: huge amount of mucus that drain posterior nasal (cavum), directly into airways, causing suffocation and coughing almost every second, days and nights. When it gets critical, I'm staying in a head and face down position so I could breath and I cannot eat and sleep. Except for when I have a flu, the quantities of mucus reach maximum when I'm at ovulation. At that time, mucus is present in the genital area as well, and I pee more than normally and frequently. MRI, CT normal. Often, my neck is blocked with some white stuff that resemble fish roe, that I find difficult to cough and cause suffocation. I had 2 corpoparasitologic tests recently, wich were normal.
With no clear diagnostic cause, the doctors were powerless, so we tried with antidepressives in so many types, categories, dosages, with no benefit. When complications became more and more with years passing by , this treatement was intreruppted. With or without them, the disease followed its way.
Lately it got worse, early morning when I have mucus stuck in nasopharynx - cavum for a long time, I cannot articulate words, as if I'm verbally handicapped. Then if that formation (of mucus) slides into the airways, speaking returns to normal but then I cannot breathe properly and I cough violently for several days. Yesterday I was feeling a powerful pain in epigastrium, followed by a night of vomiting, with fever up to 100Âº F, which lowered the second day. I cannot stand anything on my belly since I was little, and now I feel constant pain around the navel. Ecographies made throughout time were normal. What can I do? Please help me with an idea before it's too late.
Does all of this have anything to do with me having sella turcica partially empty, or my sister having endometriosis, or my father having unexplainable heart fibrillation since 40 years old, or my childhood purpura, or a rare disease, or a rare parasite, or something related with that bilirubin?
Please help me with a suggestion that could save my life! I feel I have very little time leftâ�¦ Thanks!