Hello, people.
I am sure that many went through a long differential diagnostics so maybe can advice me on what I should consider.
15 years ago I had abdominal pain. Gastroscopy revealed ulcer in the duodenum. It was somehow treated and hasn't been seen since. After that I often felt pain on the right side but didn't pay attention. Otherwise I was fine.
7 years ago I began to feel blah. Nausea, lost appetite. After the blood tests, and US and gastroscopy I was told it was cholecystitis without stones. I was symptomatically treated, kept dieting for a while, lost a lot of weight. Pain persisted but I felt generally normal for another almost 5 years.
2,5 years ago it repeated. Gastroscopy and US showed nothing. In a few months I returned back to normal.
1,5 year ago it happened again, quite severe. Could eat almost nothing, would be comatose for a while after eating. A couple of weeks after it had started, pain in the leg arose around the knee. Eventually it was difficult to walk (but disappeared soon after abdominal trouble resolved in a few months). As I understand, gastroscopy and ultrasound were always ok, and blood tests were not.
I must say all this was happening and investigated in 2 different countries which surely didn't help to diagnose. And every doc was quite agree with my declaration that I had that cholecystitis.
Now I live in a third country
It happened again half a year ago, and I came to realize that I must pay more attention. Nausea, lost appetite, started to loose weight, pain in the leg again (friends on Facebook are now divided looking at my pictures: some say that I look awful, and some envy how skinny I am). Also eczema on the feet (previous time had it as well, also gradually disappears when abdominal problems are over). I do gymnastics at home - couldn't finish my regular set: weakness. Also pain in muscles. Pain in the back for a couple of weeks, resulted in difficulty to swallow.
So the primary care doctor ran a lot of tests, coeliac, something else. I guess, all those tests they have. (Orthopedist didn't feel like investigating.) Eventually they found helicobacter. After we started antibiotics for helicobacter I felt so differently! I began to eat, even had to stop myself. And felt alright. (In three months some symptoms returned, unfortunately).
By the time of my appointment to GE doctor I felt good. The doctor anyway sent me to abdominal and pelvis CT with contrast (entero something, I don't remember exact word). It turned out clean except for one thing: ileoileal intussusception. I was told to keep a low fiber diet for a month which really helped, right now I feel no symptoms. But gastro doctor, unfortunately, interpreted it quite specifically: she told me that my pain is a result of adhesions which in turn resulted from a surgery. She didn't explain how it can be connected to my leg trouble and the rest (I don't think it can). She said, there is no need for other tests. And I must notice that I never had any abdominal surgery. I can't explain why she decided that I had. Now she says, will look through my tests again.
Perhaps I simply am unlucky with gastro doctors, have now to look for a new one.
Anyway, there is also some explanation why they are so reluctant to think big. I've got HIV, and maybe some think that it absorbs anything with no need for additional diagnosis. It also makes my blood count to behave peculiar: when normal people see an abnormally high WBC count, mine goes below lower limit as I can't produce cells when they are needed and have to send those I have. And this is just an example. CRP is always low. Vitamins are normal (only magnesium is low). No anemia. Almost everything seems within normal range (until you don't look at fluctuations of lymphocytes and neutrophils which coincide with onset of the symptoms). Fortunately, chemistry is honest: liver enzymes beautifully arise, and CPK reflects my leg problem growing 5 times above the upper limit.
It's not HIV related, as I was told, as my HIV has been well treated.
I am going to have EMG (was sent by neurologist), have an appointment to rheumatologist in a while and will definitely see another gastro doctor.
But I don't understand what is going on with me. A few months ago I myself was telling the gastro doctor that I came to have my cholecystitis cured. Now I don't know what to think. After that transient (?) intussusception had showed up, I started to look for what it was, and the first link was Crohn's disease. And all those symptoms... Now I am 42. As a kid I had asthma and psoriasis, a few years ago had anal fissure (had sphincterotomy for it). My anus is sometimes itching for the last 15 years but I am being told I have hemorrhoid. They write that ashkenazim are at higher risk for Crohn's, and so I am. But i never had any blood diarrhea, I rarely have it at all, and, frankly, I go to toilet once a day at the same hour. And my CT didn't show anything but intussusception.
On the other hand, HIV and autoimmune conditions are opposite things, and logically, autoimmune related condition can run not that severe in immune compromised patients.
That's why I came here to ask: what it could be? (But please, don't tell me it's because of HIV. It surely may have some part in it but it's hardly a cause)
I am sure that many went through a long differential diagnostics so maybe can advice me on what I should consider.
15 years ago I had abdominal pain. Gastroscopy revealed ulcer in the duodenum. It was somehow treated and hasn't been seen since. After that I often felt pain on the right side but didn't pay attention. Otherwise I was fine.
7 years ago I began to feel blah. Nausea, lost appetite. After the blood tests, and US and gastroscopy I was told it was cholecystitis without stones. I was symptomatically treated, kept dieting for a while, lost a lot of weight. Pain persisted but I felt generally normal for another almost 5 years.
2,5 years ago it repeated. Gastroscopy and US showed nothing. In a few months I returned back to normal.
1,5 year ago it happened again, quite severe. Could eat almost nothing, would be comatose for a while after eating. A couple of weeks after it had started, pain in the leg arose around the knee. Eventually it was difficult to walk (but disappeared soon after abdominal trouble resolved in a few months). As I understand, gastroscopy and ultrasound were always ok, and blood tests were not.
I must say all this was happening and investigated in 2 different countries which surely didn't help to diagnose. And every doc was quite agree with my declaration that I had that cholecystitis.
Now I live in a third country
It happened again half a year ago, and I came to realize that I must pay more attention. Nausea, lost appetite, started to loose weight, pain in the leg again (friends on Facebook are now divided looking at my pictures: some say that I look awful, and some envy how skinny I am). Also eczema on the feet (previous time had it as well, also gradually disappears when abdominal problems are over). I do gymnastics at home - couldn't finish my regular set: weakness. Also pain in muscles. Pain in the back for a couple of weeks, resulted in difficulty to swallow.So the primary care doctor ran a lot of tests, coeliac, something else. I guess, all those tests they have. (Orthopedist didn't feel like investigating.) Eventually they found helicobacter. After we started antibiotics for helicobacter I felt so differently! I began to eat, even had to stop myself. And felt alright. (In three months some symptoms returned, unfortunately).
By the time of my appointment to GE doctor I felt good. The doctor anyway sent me to abdominal and pelvis CT with contrast (entero something, I don't remember exact word). It turned out clean except for one thing: ileoileal intussusception. I was told to keep a low fiber diet for a month which really helped, right now I feel no symptoms. But gastro doctor, unfortunately, interpreted it quite specifically: she told me that my pain is a result of adhesions which in turn resulted from a surgery. She didn't explain how it can be connected to my leg trouble and the rest (I don't think it can). She said, there is no need for other tests. And I must notice that I never had any abdominal surgery. I can't explain why she decided that I had. Now she says, will look through my tests again.
Perhaps I simply am unlucky with gastro doctors, have now to look for a new one.
Anyway, there is also some explanation why they are so reluctant to think big. I've got HIV, and maybe some think that it absorbs anything with no need for additional diagnosis. It also makes my blood count to behave peculiar: when normal people see an abnormally high WBC count, mine goes below lower limit as I can't produce cells when they are needed and have to send those I have. And this is just an example. CRP is always low. Vitamins are normal (only magnesium is low). No anemia. Almost everything seems within normal range (until you don't look at fluctuations of lymphocytes and neutrophils which coincide with onset of the symptoms). Fortunately, chemistry is honest: liver enzymes beautifully arise, and CPK reflects my leg problem growing 5 times above the upper limit.
It's not HIV related, as I was told, as my HIV has been well treated.
I am going to have EMG (was sent by neurologist), have an appointment to rheumatologist in a while and will definitely see another gastro doctor.
But I don't understand what is going on with me. A few months ago I myself was telling the gastro doctor that I came to have my cholecystitis cured. Now I don't know what to think. After that transient (?) intussusception had showed up, I started to look for what it was, and the first link was Crohn's disease. And all those symptoms... Now I am 42. As a kid I had asthma and psoriasis, a few years ago had anal fissure (had sphincterotomy for it). My anus is sometimes itching for the last 15 years but I am being told I have hemorrhoid. They write that ashkenazim are at higher risk for Crohn's, and so I am. But i never had any blood diarrhea, I rarely have it at all, and, frankly, I go to toilet once a day at the same hour. And my CT didn't show anything but intussusception.
On the other hand, HIV and autoimmune conditions are opposite things, and logically, autoimmune related condition can run not that severe in immune compromised patients.
That's why I came here to ask: what it could be? (But please, don't tell me it's because of HIV. It surely may have some part in it but it's hardly a cause)
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