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This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly He's

by ptn 16y ago

This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly He's been doing that for 18 years, it's natural to try something different.

frossie 16y ago
He's been doing that for 18 years, it's natural to try something different. The likelihood of him not having found the right doctor vastly exceeds the notion that he can get a diagnosis on HN. Of course I certainly don't blame him for trying - but, really? I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications. From reading his account, I can see two conclusions: (a) he has not found the right doctor or (b) he is incurable. There is no point contemplating the latter, so the only recourse I see is helping him somehow get to the former. He needs a doctor who will take ownership of his issues, he needs a teaching hospital, he needs House MD - I don't know - but he needs help to keep trying doctors, not guesses at a diagnosis. I'd be delighted to be proven wrong.
- nzmsv 16y ago
  Upvoted. Going off on wild goose chases will waste more of OP's energy, money, and time. Quacks like homeopaths thrive on the troubles of exactly the kind of people who have tried other cures and are desperate.
  - Vivtek 16y ago
    Yeah. So do gastroenterologists.
- silencio 16y ago
  Why is it not worth a shot to ask? I wouldn't necessarily ask for medical advice nor follow it, but there'd be that small chance someone else would know something worth pursuing with my doctor (like what seems to have happened in this topic). For about 6 months on end this past year I had a laundry list of respiratory issues that several different doctors I went to couldn't figure out the root cause of. All anyone could do was to deal with the symptoms, try to come up with some kind of diagnosis, and hope that it'll fix whatever was going on. I was on at least half a dozen different meds ranging from a monthlong course of Levaquin to prednisone and nasal sprays and more at any given time, and of course none of that stuff would do anything about a nasty, persistent cough that would never go away (great timing with the H1N1 scare!). So after too many xrays and ct scans and blood tests and blowing into things and who knows what more, I was really fed up. I had been to all sorts of specialists, general practice, even my dentist (sinusitis at some point, had to rule out anything to do with my teeth), and everyone was out of ideas. It was wrecking my relationships with some clients who thought I was giving them the flu, it was preventing me from even climbing up a flight of stairs on a bad day, the cough was bad enough that I'd wake up multiple times during the night, everyone and their mother thought I had a cold or the flu or $deity forbid H1N1... I was on the verge of crying when I was waiting for a flight at an airport when some woman that had sat down next to me decided standing up and away from me was preferable to being next to me coughing into my elbow away from her. And I didn't have anything contagious at that point. :/ I bounced ideas off some friends, I ranted on twitter and irc, went to one of the doctors suggested by someone I knew, and after mixing that all together, a specific combination of a few meds solved every problem I had. A little ridiculous to think about in the end, but my limited crowdsourcing worked for me. Even with the complete lack of domain-specific knowledge, it was a bunch of fresh pairs of eyes thinking things in their own way as I and all my then-doctors had started to become one with "we have no idea what's going on". However, had any of my doctors pulled a House and ditched some choice assumptions about what happened with "99% of [their] patients" that had any one of my issues or "what happened in [my] medical history", I probably would have been much better off earlier. But I eventually (mini-crowdsourced and) met my House that assumed my medical history is tantamount to a lie and started with a blank slate. What everyone had assumed was the effect was a cause, where it was assumed something would work because it worked in the past was proven to be wrong, and now I'm here, minus most of the problems I had back then and managing the problems I can manage, happy and reasonably healthy today :)
  - ahoyhere 16y ago
    So what was the effect/cause?? I've had a continuous problem with sinus infections which always turn into bronchitis if untreated, which means I'm constantly on antibiotics, surgery barely helped, and last summer I tried to "heal myself" without antibiotics -- just for once -- and was doing fine for 1 month while exercising daily and sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so sick I thought I had pnuemonia, had to go to the emergency room. I haven't been well since. I am always tired, wheezing, etc., that yes, doctors keep trying to treat as surface issues, with steroid inhalers and nose sprays (that I can't take because I'm extremely sensitive to steroids). Haven't found a doctor yet who will really look at the whole history and figure out why I am like this now, as opposed to just treating the individual symptoms. I'm at the end of my rope, too…
    - thaumaturgy 16y ago
      My brother has had somewhat similar symptoms for years. About a year ago he got a cranial x-ray for unrelated reasons, and the doctor discovered one of the largest sinusitis infections he'd ever seen. (Unfortunately, due primarily to living in a country without accessible medical care -- the United States -- he hasn't followed up on taking care of it.) Also, make sure you keep an extremely clean and airy environment. Dust, mold, pollens, etc. will aggravate the condition.
    - silencio 16y ago
      Ouch, I feel your pain. I had multiple bouts of bronchitis and pneumonia and sinus infections and probably a cold or two and sometimes at the same time. Those were definitely diagnosed and treated as they came, but I had an underlying cough that would not go away. Everyone blamed the cough on lingering effects of the bronchitis and blamed the runny nose on the sinus infections and general breathing problems on the fact that I had just had (insert infection here)...so everyone treated that and just gave me way too much narcotic cough syrup so I can sleep at night. What it really was was that I had all of those, but they weren't as severe or as lingering as everyone thought it was as the runny nose was primarily from allergies and cough from asthma that I thought I had "grown out" of years ago. Mind you, some of the drugs to treat the symptoms were still the same, but everyone was so focused on the obvious and on the past (that I had had asthma and it was successfully treated with primarily Advair) that nobody thought to realize that maybe, just maybe, it was back and triggered by something and that all these issues were also overblown as a result, and the same drugs wouldn't necessarily work this time around. Someone at some point suspected the right thing, but Advair used to work for me, and it didn't work this time around, and more than one had put me on prednisone at some point or another and that should have done something but it didn't make a big difference either, so that came and went off the list a couple times. On the flip side, they weren't so cavalier about antibiotics, as I kept on getting switched to new ones as the old one would either stop working or wasn't effective after a few days. So with a fresh slate and with not making assumptions based on even as-recent-as-a-week-ago past, my House thought the infections were related (had enough antibiotics and more to mask the symptoms, but probably not gone altogether) and that my asthma was probably back and bothering me at the same time since if he ignored all the symptoms clearly and only associated with my infections, it was exactly asthma, rather than shoehorning that into "oh it's because of the bronchitis" cause that's what happens to "most people". In the end, one month of Levaquin seemed to work to obliterate my then-sinus infection, and the rest of it disappeared into thin air when I started a combination of Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work well for you as half that are steroids :S Soooo...I know when I had the sinus infections from hell, my neti pot was my best friend (every hour, if I could get away with it...), but I don't have any suggestions beyond that :( My story is more of a "people made assumptions and they were wrong about something so obvious" than a rare/hard to diagnose one.
- wjy 16y ago
  I think the fact that one can go from doctor to doctor for 18 years and not get a proper diagnosis speaks volumes about medicine today. We collectively know so much about the human body and its afflictions, but yet so many doctors seem clueless.
- Tichy 16y ago
  "I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications." You are making the common mistake of assuming that people will just believe everything people write on the internet. Why not give the OP the benefit of the doubt and assume that he can sort through the answers in a rational enough way. And it could still be diet related, you know... Even this clumsiness which sounds like a scary brain tumor symptom, who knows, maybe it is just lack of blood sugar or whatever (I have no idea). Also, how do you suggest he finds the right doctor, if not by somebodies recommendation? Isn't stuff like that the primary reason that people talk and exchange information?

by ptn 16y ago

frossie 16y ago

He's been doing that for 18 years, it's natural to try something different. The likelihood of him not having found the right doctor vastly exceeds the notion that he can get a diagnosis on HN. Of course I certainly don't blame him for trying - but, really? I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications. From reading his account, I can see two conclusions: (a) he has not found the right doctor or (b) he is incurable. There is no point contemplating the latter, so the only recourse I see is helping him somehow get to the former. He needs a doctor who will take ownership of his issues, he needs a teaching hospital, he needs House MD - I don't know - but he needs help to keep trying doctors, not guesses at a diagnosis. I'd be delighted to be proven wrong.

nzmsv 16y ago
Upvoted. Going off on wild goose chases will waste more of OP's energy, money, and time. Quacks like homeopaths thrive on the troubles of exactly the kind of people who have tried other cures and are desperate.
- Vivtek 16y ago
  Yeah. So do gastroenterologists.
silencio 16y ago
Why is it not worth a shot to ask? I wouldn't necessarily ask for medical advice nor follow it, but there'd be that small chance someone else would know something worth pursuing with my doctor (like what seems to have happened in this topic). For about 6 months on end this past year I had a laundry list of respiratory issues that several different doctors I went to couldn't figure out the root cause of. All anyone could do was to deal with the symptoms, try to come up with some kind of diagnosis, and hope that it'll fix whatever was going on. I was on at least half a dozen different meds ranging from a monthlong course of Levaquin to prednisone and nasal sprays and more at any given time, and of course none of that stuff would do anything about a nasty, persistent cough that would never go away (great timing with the H1N1 scare!). So after too many xrays and ct scans and blood tests and blowing into things and who knows what more, I was really fed up. I had been to all sorts of specialists, general practice, even my dentist (sinusitis at some point, had to rule out anything to do with my teeth), and everyone was out of ideas. It was wrecking my relationships with some clients who thought I was giving them the flu, it was preventing me from even climbing up a flight of stairs on a bad day, the cough was bad enough that I'd wake up multiple times during the night, everyone and their mother thought I had a cold or the flu or $deity forbid H1N1... I was on the verge of crying when I was waiting for a flight at an airport when some woman that had sat down next to me decided standing up and away from me was preferable to being next to me coughing into my elbow away from her. And I didn't have anything contagious at that point. :/ I bounced ideas off some friends, I ranted on twitter and irc, went to one of the doctors suggested by someone I knew, and after mixing that all together, a specific combination of a few meds solved every problem I had. A little ridiculous to think about in the end, but my limited crowdsourcing worked for me. Even with the complete lack of domain-specific knowledge, it was a bunch of fresh pairs of eyes thinking things in their own way as I and all my then-doctors had started to become one with "we have no idea what's going on". However, had any of my doctors pulled a House and ditched some choice assumptions about what happened with "99% of [their] patients" that had any one of my issues or "what happened in [my] medical history", I probably would have been much better off earlier. But I eventually (mini-crowdsourced and) met my House that assumed my medical history is tantamount to a lie and started with a blank slate. What everyone had assumed was the effect was a cause, where it was assumed something would work because it worked in the past was proven to be wrong, and now I'm here, minus most of the problems I had back then and managing the problems I can manage, happy and reasonably healthy today :)
- ahoyhere 16y ago
  So what was the effect/cause?? I've had a continuous problem with sinus infections which always turn into bronchitis if untreated, which means I'm constantly on antibiotics, surgery barely helped, and last summer I tried to "heal myself" without antibiotics -- just for once -- and was doing fine for 1 month while exercising daily and sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so sick I thought I had pnuemonia, had to go to the emergency room. I haven't been well since. I am always tired, wheezing, etc., that yes, doctors keep trying to treat as surface issues, with steroid inhalers and nose sprays (that I can't take because I'm extremely sensitive to steroids). Haven't found a doctor yet who will really look at the whole history and figure out why I am like this now, as opposed to just treating the individual symptoms. I'm at the end of my rope, too…
  - thaumaturgy 16y ago
    My brother has had somewhat similar symptoms for years. About a year ago he got a cranial x-ray for unrelated reasons, and the doctor discovered one of the largest sinusitis infections he'd ever seen. (Unfortunately, due primarily to living in a country without accessible medical care -- the United States -- he hasn't followed up on taking care of it.) Also, make sure you keep an extremely clean and airy environment. Dust, mold, pollens, etc. will aggravate the condition.
  - silencio 16y ago
    Ouch, I feel your pain. I had multiple bouts of bronchitis and pneumonia and sinus infections and probably a cold or two and sometimes at the same time. Those were definitely diagnosed and treated as they came, but I had an underlying cough that would not go away. Everyone blamed the cough on lingering effects of the bronchitis and blamed the runny nose on the sinus infections and general breathing problems on the fact that I had just had (insert infection here)...so everyone treated that and just gave me way too much narcotic cough syrup so I can sleep at night. What it really was was that I had all of those, but they weren't as severe or as lingering as everyone thought it was as the runny nose was primarily from allergies and cough from asthma that I thought I had "grown out" of years ago. Mind you, some of the drugs to treat the symptoms were still the same, but everyone was so focused on the obvious and on the past (that I had had asthma and it was successfully treated with primarily Advair) that nobody thought to realize that maybe, just maybe, it was back and triggered by something and that all these issues were also overblown as a result, and the same drugs wouldn't necessarily work this time around. Someone at some point suspected the right thing, but Advair used to work for me, and it didn't work this time around, and more than one had put me on prednisone at some point or another and that should have done something but it didn't make a big difference either, so that came and went off the list a couple times. On the flip side, they weren't so cavalier about antibiotics, as I kept on getting switched to new ones as the old one would either stop working or wasn't effective after a few days. So with a fresh slate and with not making assumptions based on even as-recent-as-a-week-ago past, my House thought the infections were related (had enough antibiotics and more to mask the symptoms, but probably not gone altogether) and that my asthma was probably back and bothering me at the same time since if he ignored all the symptoms clearly and only associated with my infections, it was exactly asthma, rather than shoehorning that into "oh it's because of the bronchitis" cause that's what happens to "most people". In the end, one month of Levaquin seemed to work to obliterate my then-sinus infection, and the rest of it disappeared into thin air when I started a combination of Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work well for you as half that are steroids :S Soooo...I know when I had the sinus infections from hell, my neti pot was my best friend (every hour, if I could get away with it...), but I don't have any suggestions beyond that :( My story is more of a "people made assumptions and they were wrong about something so obvious" than a rare/hard to diagnose one.
wjy 16y ago
I think the fact that one can go from doctor to doctor for 18 years and not get a proper diagnosis speaks volumes about medicine today. We collectively know so much about the human body and its afflictions, but yet so many doctors seem clueless.
Tichy 16y ago
"I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications." You are making the common mistake of assuming that people will just believe everything people write on the internet. Why not give the OP the benefit of the doubt and assume that he can sort through the answers in a rational enough way. And it could still be diet related, you know... Even this clumsiness which sounds like a scary brain tumor symptom, who knows, maybe it is just lack of blood sugar or whatever (I have no idea). Also, how do you suggest he finds the right doctor, if not by somebodies recommendation? Isn't stuff like that the primary reason that people talk and exchange information?