Join Date: Aug 2012
Live breaking illness.
It's very long, i've spent quite a bit of time to write it.
i'd like to ask for understanding, my english might not be perfect.
i'm 18 years old and I come from Poland.
I'm sick since i'm 4.
I had appendectomy (as most people in my family).
I have chronic diarrhea(between once and 3 times a day, not a big problem, if not the pain (sometimes so huge I just scream) and I must go to toiled immediately (no way to hold even 5 minutes). Same for my brother, just that is not all yet...
Skin - ulcers or something like this, even few centimeters big, I have loads of them and they're scaring type. Blood and pus, bleeding long time (20-30minutes or sometimes even few days, if it’s in a bad place...), they're deep and extremely painful, appearing in loads of places.
In the morning, cold. I feel SO COLD, that even during SUMMER, when i have to wake early on (sleeping 10-14hours, usually 12) i feel so cold, i have to heat myself with something and during winter? Impossible to describe. My hands and whole body is completely cold.
Nausea every morning, i never eat breakfast, my brother and father neither... NEVER. I just cant, after i wake up, i barely drink some water, then a tea and ~6 hours later I can eat first meal of the day.
I breathe with open mouth, nose is simply “not enough” i feel like choking, lacking air. I sleep with open mouth (my brother too) and wake up with completely dry mouth and tonge every morning, horrible experience as well...
Then, pseudo allergy. I went to few doctors about it, skin test resulting in swelling to everything (everything on NFZ insurance), most said nothing (!) One said dermographism(skin-writing). I made blood tests, i'm not allergic to any of the common allergenes. I need to take anti histamine (cytrosini dihydrochloridum) all the time, or my whole body starts to BURN AND ITCH- huge pain, large swelling. I try to take it as rarely as i can, but i MUST take at least 2 pills per 3 days (one every 30-36hours), or it gets unbearable, i try to take it as rarely as possible, as i got sideeffects (i feel sleepy, exhausted etc).
Also a steroid cremes helps, swelling pain and itching disappears immediately, yet only for hour to 4 tops. (Hydrocortisoni burytas 0.1% creme)
Joint and muscle pain 24/7 bigger on smaller, cause of being 24/7 it’s unbearable.
And new sympthom, my skin is “rough”, peels off and sometimes even to blood, when treated with steroid (Hydrocortisoni burytas 0.1% creme) it disappears for a day (at start, later on it lasted less and less) and then its back, around month, it no longer responds to it so well, skin no longers gets back to “smooth normal one” anymore. It appeared on shoulders and abdomen like 8 months ago at start and is spreading and getting worse (as all other sympthoms).
Migrenes, all of my family members (except mother) has them. No idea where they’re from. Some say it’s about weather...
Had two gastroscopies over many years and one colonoscopy year ago (still have tissue from it, with macroscopic being fine - in description, microscopic observation shows inflamation described as idiopathic...
Lastly came random contractions of muscles, spasms, i cant control those, few times i woke up at night with contraction of e.g. leg muscle causing HUGE pain too, automatically causing scream before i even fully wake up to do something about it.
Low electrolytes (probably cause of diarrhoea which is always liquid or ends with liquid) is the cause, probably, but even consuming more NaCl, eating special supplements does NOT HELP! Even in doses of 500-700% GDA. Why? After IV in ER i had no contractions for 4-5days.
I have like 200 pages of A4 tests, older and newer... scanning all is pointless. I can post pictures of the ulcers (they start appearing as a painful inflamed area deep in skin - inflamation is usually big, even 10 cm diameter PER EACH, i have like 8-10 active as i write this text and far over hundred of scars...) All lymph nodes are swollen, but that is not weird with that ulcers.
After being discharged , i went directly from there on ER in Leszno cause I lost feeling in whole body (like paresthesis or something like this, hard to explain), all muscles got contracted, i felt huge pain, felt like one elephant sitting on my chest and another one on legs.
In the time i was feeling like i’ll stop breathing at home, i asked my mother and father to give me inhalatory steroids (my father uses those) and got creamed with this steroid creme (and I think it’s the only thing that saved my life, for whatever reason i had such attack...).
Ambulance came, took me to hospital (diazepam, given in ambulance - felt like sticking NEEDLE INTO WOOD, painful like hell), In hospital, IV anti-inflammatory, electrolytes, ,NaCl 0.9%, ringer’s solution (i only remember those, cause NONE are written on my release chart from hospital, except perfalgam IV (paracetamolum intravenous) and PWE 1000.
Doctor on ER stabilised me (on discharge i have completely NO INFO at all... Literally, no words to describe this incompetence, no details on what i got IV, so i cant know what reall happened)), first said it was psychological (i had 40 celcius degrees at home and 38 when arrived in ER on cold night, during spring, barely clothed), then asked (after told other sympthoms) if i had a test for Cestoda (and other parasited) I said yes, as like 2 out of 3 doctors met (totalling for like 40-60 in total i met) made tests for parasites or gave me pills immedietaly just for precaution. I told him so and he said nothing, i just got discharged without explaining me.
raised WBC(looks like infection to me), Na - 132.61 mmol/L (135-145)
K - 3.08 mmol/L (3.5 - 5)
Also raised mixed cells count and percent (11.2%, 1.6 K/uL), same for neutrophiles (82.5%, 11.5K/uL)
But, he had to write something, so he has written “Dyselectrolysis because of chronic diarrhoea” and said BYE BYE.
After that, i felt GREAT for like 20hours. No joint pain, no muscle pain, no neck pain (cause of so many ulcers even on neck, turning it is a pain), after that, everything came back and it caused a huge depression, as I now know how BIG the pain really is (first time for maaany years i felt good). Normal pain-killers are not working, even few stronger ones on prescription did not help, anti-inflamatory pills does not help.
I’m male yet i never had voice change, my testorone is 309 ng / dl while range is 280-800 ng/dl and my endocrynologist (only availiable) said it’s “in normal range” even for my age?! I’m at my “testosterone peak” and it’ll only get worse, so, great.
She thought for a moment, got curious about my voice at the very start, i have had gynecomasty too, some still says it’s gynecomasty other says lipomasty...
I used to weigh 106 kg, height 185cm.
I went down to 88kg, yet i quickly went back to 95, i do my best to hold it, i do not eat candies etc, i do my best, keep the diet, have diarrhoea and still gain weight that is just ridiculous!
Last edited by edvin; 08-28-2012 at 03:13 AM.