Guest guest Posted March 5, 2004 Report Share Posted March 5, 2004 Can anyone help Sonja? Thanks in advance...Mark sonja's email is sidorow.guide@... SV: Pancreatitis A cry for help from Stockholm, do you recognize my symptoms? Hello Tony and whoever reads this and can help me. I will try to give you a brief introduction of my situation. English is no problem, I was married to an englishman and have been to England many times, I love your country, I visited London and Brighton for the first time at the age of 14. My problems started during spring and early summer of 2003. I had leftside pain, right under the heart following the ribs, pain radiating to my midback, stagging feeling leftside stomach mostly 1,1/2-2;1/2 hours after meals. Hours of bowelmovements very loud, dry mouth, swollen lips with small red spots hurting, a feeling of beeing burnt by a hot cup of tea. Food and drinks did not taste well, stopped all alcohol and meat, avoiding fat, just by instinct. Very tired, dizzy in the afternoons, went to bed at 7 pm, a feeling as I was fainting, feeling like a zoombie at times unpleasant feeling of loosing conscious, my legs num and feeling the pulse in my body. Slowmotion feeling, cant think. Red spots1-2 inch in the face lasting 1-3 weeks.Loosing weight, foodrelated problems as I see it (doctors are not sure, wants to relate it to different deseases). I have lost 10 kg in 8 months, (3 kilos last 3 weeks) I have seen doctor after doctor, after 3 visits they have said -Sorry we cant find anything, test are ok. Amylase 0.35 (0.2-0.8), ALAT from 0.55-1.06 (max 0.6) (except for 2 weeks in Nov/dec in hospital ALAT raised daily to max 6,0 and then down to 1,0 in 10 days!) ASAT 0,3-0.7 (max 0.6) (nov/dec in hosp up to 3,0), P-Ferritin 300 (max 150), BErytrocyt 3,8 (4,0-5,0), Erc Volyfrakt EVF 34 (norm 37-43). I take Levaxin as I had hight TSH. Low Urea 2.5 (<3), as you can see nothing exeptional. Normal glucos, CRP and GT, Oleat-test ok, porfyritest ok. I have done Ultrasound aorta, spleen, pancreas - normal except for a slight thickend musclelayer of the ventricel (?dont know the english words) Some veins are seen not common in this area. Datortomografi epigastrium with and without contrastinjection: 6 hemangioms found in the liver, biopsi not malign Gastroscopi: no comments EEG: no comments Coloscopi: no comments Small intestin x-ray: no comments MRT/MRCP: no comments except for thickend leftside lungcondensation, (lungxray nothing seen), normal pancreas, ductus pancreatitis, normal signal pattern, normal gallbladder, no concrements. Normal speen. Normal kidneys. Add to this a long list all the bloodtests and nothing, no clinical diagnosis. They now regard me as a hypocondric anorectic 51 year old woman. I get worse and worse, my pain now grips inside my stomach and can last for days, in periods, like something squeezing me inside. Total colapse, cant hardly get out of bed, dizzy and legs num and pulse felt all the the way from the navel to the head, dizzy, hard to breath. Pain around the navel. I take Dexofen 100 mg Paracetamol 2x500mg, sometimes doesnt help, need morfin. I take 2x3 (x4) Pancreon forte with each meal, I eat very little I dont tolerate much. Stools normal (but lots of it compared to how little I eat) colour and structure, altough I can see rice, carrots, seeds. Sometimes a slick of oil. Liquid food or starvation best condition. I have red in English papers and some Swedish that there are chronicale pancreatitis that cannot be seen on the tests I have performed. Is this your experience. Do you recognize my symptoms? I suffer a lot and live like in hell. The hospital does not want to to anything more.- We have reached dead end street. Thats what they have told me. I feel desperate. With each attack and week it gets worse. What is it, what can I do. I am just 51, too early to give in. Please if you know of other cases let me know. Can I get in touch or help in England? They dont want to do an ERCP, too dangerous no evidence found to prove the test to be done. Treatment by symptoms no diagnosis, of chronic pancreatitis and colon irrirabile, next step? Stronger painkillers. I have been at Huddinge University hospital in Stockholm-Sweden, gastro entereologi/hepatologi ward. Contact with my doctor only by fax and telephone, I have seen " my doctor " twice in 3 months, last time 9th of Jan. Last two days in hospital for small intest xray and urinetest, saw 2 doctors who did not know me, have asked for pancres specialist, they say they are. But they dont recognize my symptoms as typical. Please someone helps me! Best regards Sonja sidorow.guide@... -----Ursprungligt meddelande----- Från: Tony Crispin Skickat: den 3 mars 2004 20:44 Till: sidorow.guide@... Kopia: Mark E. Armstrong Ämne: Pancreatitis Hi Sonja Mark Armstrong sent me your email to see if I can assist you.I am Tony Crispin the UK rep for Pancreatitis Assoc International I am a registered nurse in the UK.Mark and I work together to assist people with C Pancreatitis.I have it myself this past 33yrs. Could you bring me up to date with what is happening to you by way of your disease history,investigations symptoms and treatment so far etc.Please tell me if language is likely to be a problem I must say your emails seem fine and in your country English is taught a lot. The details will tell me how best to advise you about your Pancreatitis.I see you have had an appointment this past week with your doctor.I hope you are feeling ok at the moment.Regards Tony Tony Crispin RN Pancreatitis Association International Representative UK Email crispin@... http://www.crispina.freeserve.co.uk ICQ 133821883 I hope this finds you and yours well Mark E. Armstrong casca@... www.top5plus5.com PAI NW Rep ICQ #59196115 Quote Link to comment Share on other sites More sharing options...
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