4 ms·

People can't solve problems like this one without experience in the medical field, which you're unlikely to find here. Can I stress this? This person doesn't n

by frossie 16y ago

People can't solve problems like this one without experience in the medical field, which you're unlikely to find here. Can I stress this? 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. Dealing with the medical profession, especially in the US, takes a lot of energy that a person in this state does not have. So instead of trying to guess at his disease, why don't people brainstorm the issue of how to get access to more doctors? Here's one to start the ball rolling: hire a part-time personal assistance and make it their job to get you medical appointments. Okay, that's a possibly unrealistically expensive suggestion, and I am sure others can do better.

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 :)
savemylife 16y ago
OP here. I've been looking up symptoms and chasing specialists for years. The idea of an assistant (patient advocate) is really appealing though. That's the kind of thing I've always hoped to find in a Primary Care doc, but so far haven't found. It seems cosmically unfair that sick people lack the energy to rustle up the resources to get themselves properly treated, but that's reality.
Tichy 16y ago
The problem is that after the while, the experimentation doctors tend to do can become damaging. The OP already mentions one operation with negative net effect, as well as taking anti depressants for years (they tend to have side effects). If you go to a specialist in X, he will at least experiment with some of the treatments for X (hence antidepressants if you go see a psychiatrist). I think that is just how medicine works most of the time: exclude some things from the symptoms, then experiment with cures. If you do that for several years, it becomes really trying. I wonder if a nice database of everything that has been tried on a patient could possibly help a bit? Doesn't Google provide some kind of service for that?
frossie 16y ago
hire a part-time personal assistance and make it their job to get you medical appointments. Too late to edit my own post, but I have since found that there are actually professional medical advocates - a random example I found by looking for somebody in Ohio is this guy: http://www.thefamilyadvocate.com/what.html http://www.thefamilyadvocate.com/what.html (just to give you the idea) Sure they seem to specialise in hospitalised people, but that seems to be because they are the very ill ones. I think the OP qualifies. Perhaps it would be possible to hire such a person to navigate the maze of getting to the right specialist, or how to obtain the most appropriate referrals - or any of these mundane matters that are so hard to tackle when one is simply exhausted.

by frossie 16y ago

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 :)

savemylife 16y ago

OP here. I've been looking up symptoms and chasing specialists for years. The idea of an assistant (patient advocate) is really appealing though. That's the kind of thing I've always hoped to find in a Primary Care doc, but so far haven't found. It seems cosmically unfair that sick people lack the energy to rustle up the resources to get themselves properly treated, but that's reality.

Tichy 16y ago

The problem is that after the while, the experimentation doctors tend to do can become damaging. The OP already mentions one operation with negative net effect, as well as taking anti depressants for years (they tend to have side effects). If you go to a specialist in X, he will at least experiment with some of the treatments for X (hence antidepressants if you go see a psychiatrist). I think that is just how medicine works most of the time: exclude some things from the symptoms, then experiment with cures. If you do that for several years, it becomes really trying. I wonder if a nice database of everything that has been tried on a patient could possibly help a bit? Doesn't Google provide some kind of service for that?

frossie 16y ago

hire a part-time personal assistance and make it their job to get you medical appointments. Too late to edit my own post, but I have since found that there are actually professional medical advocates - a random example I found by looking for somebody in Ohio is this guy: http://www.thefamilyadvocate.com/what.html http://www.thefamilyadvocate.com/what.html (just to give you the idea) Sure they seem to specialise in hospitalised people, but that seems to be because they are the very ill ones. I think the OP qualifies. Perhaps it would be possible to hire such a person to navigate the maze of getting to the right specialist, or how to obtain the most appropriate referrals - or any of these mundane matters that are so hard to tackle when one is simply exhausted.