Mystery problem after endoscopy (but might not be related)

Posted by kfldiver @kfldiver, Mar 3, 2018

Hi my husband (62m) has some concerning symptoms for the past 4 months and we have been through a host of tests and gotten nowhere. Now it feels as if the doctors are ordering tests to look for things that the doctors can even explain to us how they would cause his symptoms, so I am hoping to get more guidance in my research of what to ask next. Here is what is going on… My husband had an routine endoscopy (and stomach biopsy) in early November due to heart burn and burping which had increased over the last two years. The doctors found a 2cm hiatle hernia and no other significant findings. He began taking Prilosec (he routinely takes a baby aspirin and is on no other medications) as recommended by the doctor just after his endoscopy (he was prescribed to take it for 8 weeks but was told to stay on it for 3 1/2 months since he began to have to take NSAIDs for the pain post endoscopy – he is now off the Prilosec). 2 days later he had significant pain/pressure in his rib cage which became intense within a week after the endoscopy. The pain moved around depending on what side he was laying on, what time of day, and was accompanied by shortness of breath and nausea. We have kept a detailed journal of this and have NOT seen any correlation with his symptoms and eating, BUT he begins to burp frequently when he is feeling bad and has bad breath. He also has light colored stools, and extreme itchyness in his lower legs (from the knees to the ankles) – neither of which are normal for him. His pain symptoms seem to come in waves and are frequently accompanied by shortness of breath and high blood pressure. He has not been able to be active since this has happened as if he even walks a short distance it (most of the time) increases his symptoms significantly. So back to the week after his endoscopy… We returned to the doctor and they did chest X-rays (no findings) and told him maybe it was arthritis (which has never made any sense to us). Two days later it was bad enough that we went to the urgent care and he had blood work and an EKG and another set of chest X-rays (slight low voltage on the ekg, no findings on the chest X-ray, high WBC 13 k/ul and high neutrophils 9.9 k/ul and high monocytes .9 k/ul and low lipase 10 u/l – all other tests came back in normal range). We were again told it was probably just arthritis. His symptoms continued and we returned to the doctor. In December his had another slightly low voltage ekg, WBC and neutrophils were both back down in normal range, and his CRP (26 mg/l) and ERS (30 mm/h) were both tested for the first time and high. He had an abdominal CT and there was a small pulmonary node and a small thyroid node (we were told both were not significant) and they said he looked constipated. The doctors sent him to a physical therapist in December and he continued through January – no results. In January he had another set of blood work – high CRP (27 mg/l) high ERS (26 mm/h) and high neutrophils (7.5 k/ul), and an echocardiogram (we were told there were no significant findings and his heart looked great). In February he again had blood work – high CRP (22 mg/l) high ERS (26 mm/h) high cyclic citrullinated peptide AB (34 u/ml) and negative rheumatoid factor (WBC was not tested in Feb). He also had a low CK test but that makes some sense after 4 months of very little activity for a normally active guy. At this point his symptoms are still coming in waves and not improving. He eats a very healthy diet (mostly whole non-processed ingredients, mostly plant based with some chicken). Before this he was a very active guy, who spent most of the last year diving, swimming, and hiking everyday (we are biologist and are jobs keep him very active) but since this has been in such excruciating pain when a wave comes that he has been unable to work or participate in any of his normally fun (or even not fun) activities. He has seen GI specialists, cardiologist, rheumatologist, internal medicine specialist, and a physical therapist. He normally docent go to the doctor and in the past I have been blown away by his pain threshold, but myself and everyone else in the family have never seen him in so much pain as this. The doctors now think maybe he has a disk issue (which would not explain the burping, itchy legs, nausea, lack of appetite, light colored stools, high WBC and other blood work outliers) and my husband is honestly fed up with going to the doctor as it feels they are just ordering tests for no reason at this point. Has anyone else ever had anything like this? Any help at all or info on similar experiences would be so very appreciated…. Thank you and sorry for so much info overload…

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