Hi, I am 29 yrs old and am desperate for help. Whatever is wrong with me is real(Drs. always look baffled or at me like I have 3 heads) and it is taking over my life-between the financial burden of all the dr. visits, time, the fatigue and pain, all affects what I can do , my life w/ my 3 children and husband. I have been given the runaround for really 2 yrs now and my symptoms are getting worse to the point I am frightened for my life .
I dont know if this is one Big problem or if somehow 20 things went wrong coincidently all at once
from 11-06 til current I get sudden severe pain in abdomen and have to run to bathroom(#2)
not to be gross stool mostly looks muddy or well..like peanut butter or liquid that comes and goes-had colonoscopies-nothing but never checked sm intestine(1 doc said maybe crohns in sm intest.?)
since this, out of nowhere past november(07) i STARTED with breathing problems
sometimes my heart would race and id get clammy but nonetheless I would have diff. inhaling deeply. it feels like I cant get ENOUGH air in my lungs or like im suffocating-also sharp pains thru back in ling area only when inhaling( has woken me out of sleep too) Pulmonary dr. treated me for COPD/asthma(that was my only sy,ptom at the time) but no help- then as new symptoms arose he felt it was a central nervous system disorder or autoimmune disease MS, SLE(other drs havent figured out yet)that was affecting my lungs and since this lung thing is a relapse type thing too.
Then in Feb.08 as this took a break I had diff. swallowing, GI found fungus in esophagus(assumed it was from advair id taken)and since have enlarged lymph nodes thru soft tissues of neck and submandibular area still there.-lumpiness inside cheek(not a sore but in lining of lip and cheek) red spots on ssoft palate in mouth and glottis-
High EBV levels 3200!
severe fatigue on /off-fine one min. then gonna drop the next
nausea for 5 mos straight-treated me w/ reglan and zofran didnt help
severe pains in neck and throbbing feeling constant- also shoots into head-sometimes feels like electricity-see chiropractor-doesnt help
have trigger points all thru neck and shoulder area down middle back
some headaches last a week at a time
sometime hurts in several spots just to touch head-tender
vision disturbances occasionally-double or floaters
on/off achy muscles
on/off joint pain and bones hurt--no swelling though
sever tiredness /no energy
wake up with stiff ankles every morning almost
almost constant pain in abdomen-tender to touch
sudden pains in kidney area often(radiates thru back)
Ive had alot of UTIs and a few bladder/kidney infections(though some I wasnt aware of-Gyno told me from urine sample)
I get red bumps on scalp that hurt
I have flat white patches on arm for a long time sometimes itches-doesnt tan
Had 3 beauty marks surg. removed in 4 months-severe dysplastic nevus(last stage before melanoma)
FYI-Family history of many cancers
Had molar pregnancy 3 1/2 yrs ago
had precancerous cells on cervix
have high risk #'s of HPV(not wart type)
Ive had cts and MRI's done -not much found-
1 spot on brain found(suggest MS) new MRI showed nothing????
nothing in bloodwork-no ANA's for lupus
chest xray nothing found but that was done 1st time had symptom-could itve been too soon to detect prob?
recent ct of abdomen showed fluid (that wasnt there 2 mos ago) in pelvic area and fallopian tube--was in horrible pn went to ER other day
Ive had persistent hoarseness of throat/voice changed,my mouth always has burning /tingly sensation(tongus,roof, throat)
Ive been on antibiotics-so cant be infection
pain and pressure in ears comes/goes ENT saw nothing
Throat hurts and feels like its swollen inside /like someones squeezing my neck-noone sees anything
Chronic phlegm in throat and post nasal drip-years! no meds help-Ive tried OTC, RX meds, allergy meds, asthma meds, reflux meds???????
My biggest fear is with my mouth could it be oral/throat cancer since pain in ears, throat, neck persist now burning mouth, abnormalities in mouth including gums slightly discolored to lt purplish, pain thru jaw and so many risk factors-smoked 15 yrs, Epstein barr, HPV fam hist???????
My lungs.....-I feel like im going to suffocate . it hurts and feels tight with pns thru back and in chest to expand them-------is it sarcoids, central nervous, autoimmune??????????I dont know what taken my whole body but I have a 12, 5 and 2 yr old and I cant function most days cause Im in pain or wesk and exhausted!
Im frustrated beyond understanding because 1-Ive been to an ENT, GI, rheumatologist, gyno, pulmonary dr, hematologist , noone knows although noone examines me they just look at me and say i dont know or your too young to have anything serious! please help!!!
Recognize the risks associated with Crohn’s disease.
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