5 ms·

People can't solve problems like this one without experience in the medical field, which you're unlikely to find here. That said: your description of symptoms

People can't solve problems like this one without experience in the medical field, which you're unlikely to find here. That said: your description of symptoms has all of the hallmarks for an autoimmune disease. So, I assume you've had extensive blood workups done? What are your antibody results from them? Your lymphocyte counts? How's the iron content in your blood? You also mention sensitivity to heat. What's your average body temperature like? Is your urine clear, yellow, dark? (signs of dehydration) You're missing many of the specifics that I would expect from a post like this, targeted out a community like this one.

Tichy 16y ago
I think what he can hope for is somebody with similar problems or somebody knowing somebody with similar problems. If doctors who can treat this (or at least diagnose it) are rare, finding the right one could become difficult, and crowd sourcing might be worth a try. Also, maybe the hacker mentality would be to somehow find what is going on by oneself (debugging the body). While I have nowhere as severe symptoms, I have also often suffered from fatigue and sleeplessness. I keep thinking I should keep track of my condition more rigorously to maybe identify the problem. For starters, keep detailed logs (things like foods eaten, exercise, mood, sleep cycles etc) - maybe a pattern might emerge? In fact I hope to write "an app for that" soon.
savemylife 16y ago
Yes, lots of tests. Mostly normal except what I mentioned in the blog- Hashimoto's Thyroiditis (i.e. low thyroid), treated to within normal range using Synthroid and Cytomel. That and "elevated IgA". Quote from doctor: "blood testosterone is normal, blood studies for hydrocortisone, prolactin, red and white blood cells and inflammation are normal. The only other blood study which is not normal is your serum IgA level, which is slightly high." Body temp usually a bit below 98.6 (which I'm told is actually quite normal). Urine is usually slightly yellow.
- Vivtek 16y ago
  "Slightly high" means it probably doesn't mean a lot. Frustrating.
- thaumaturgy 16y ago
  IgA is immunoglobulin A, which is likely directly related to your nasal congestion. The elevated levels could either be causing the congestion, or a result of the congestion. Do they give you actual numbers, or just "normal"? I'm always more interested in the actual numbers, rather than someone's interpretation of them. (Even when the someone is a trusted expert in their field.) According to the AARDA, there's no such thing as a test for all autoimmune diseases [1], which is surprising to me. You're probably going to have to submit to a very long series of tests, ruling out one possibility after another, unfortunately. A kind of reverse lottery. And just FYI, I settled on an autoimmune disease for the following reasons: fatigue (common symptom for a heightened immune response); muscle pain (i.e., flu-like symptoms); numbness / loss of dexterity (nerve damage); nasal congestion (classic immune response). Medical diagnosis can further be complicated by co-diseases, or other situations where something causes another series of symptoms as an unrelated side effect. i.e., you start with an infection of some kind, which presents a certain set of symptoms, but then you develop a rotten gut as a side-effect of your body's response to the infection, and then you get distracted looking for IBS, and assume that the IBS-like symptoms are causing the rest of the symptoms. You might try focusing on the possibility of Lyme disease for a while, only because you did test positive for it, and AFAIK it's not a very well understood disease. There are a wide range of symptoms and other problems associated with it, and they can surface years after the initial infection. I think the majority of its effects are incurable but treatable, but I'm not terribly certain about this. The only reason I know anything about it at all is because it's endemic in my area, and there was a possibility that I was infected a few years ago. Good luck. [1]: http://www.aarda.org/infocus_article.php?ID=15 http://www.aarda.org/infocus_article.php?ID=15
  - Vivtek 16y ago
    Yeah, there's no way to test for all allergies, either - and autoimmunity is just an allergy to a protein you make yourself. I was shocked to discover this, but there are on the order of 100,000 different proteins in blood, and electrophoresis is the most general test for them. However, electrophoresis can only sort them by weight. So it's useless for antibodies, which are mostly of similar size. To check for allergy to a specific allergen, they take the allergen, attach it to a radioactive particle, glue your antibodies to a plate, and see how radioactive the plate gets when you wash it in the tagged allergen. Repeat for every allergen. Really. Somebody will come up with what I expect to be a nanotechnology-based antibody assay or inventory method and will make a freaking mint someday. It could be you! It could be me! But it's definitely an opportunity that's out there.
cperciva 16y ago
That said: your description of symptoms has all of the hallmarks for an autoimmune disease. So, I assume you've had extensive blood workups done? What are your antibody results from them? Your lymphocyte counts? How's the iron content in your blood? I'd say autoimmune and/or endocrine -- there's a lot of overlap, given how many endocrine conditions involve autoimmune damage. While we're listing blood tests, I'd be interested in calcium, albumin, free T4 (TSH is usually enough to manage hypothyroidism, but it's worth checking in odd cases like this), cortisol, and testosterone. Edit: Comment below says that cortisol and testosterone are normal, and that thyroiditis was "treated to within normal range" -- not clear if this is normal TSH or normal free T4.
neurotech1 16y ago
There is at least one MD who regularly posts here, that I know of. I'm not a doctor myself, I'm an EEG tech. That said, I agree that without specific details, its harder to know whats going on.
megablast 16y ago
The medical field is great at solving simple or common ailments, not so good at more complex diagnoses. I always found it amazing that we even use medical professionals for this, an expert system with a medical assistant would be much superior to the current, for most cases, and I remember being told it has been proven so. However, some cases are just bizarre, that they haven't come up before, or are mostly in someones head, for which there is very little anyone can do. Unless you are rich.
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.
invisible 16y ago
I am a bit appalled by your candor at his serious problems with regard to finding a fix. Medical professionals have utterly failed him for 18 years (half a lifetime for some). He may not find what he needs to take/do and get a prescription from HN, but he may get a great diagnosis (like B12 deficiency due to pernicious anemia) that may end up being true. I think you're putting non-E.R. doctors on a pedestal that more often than not they do not deserve to be on. The fact is that they diagnose based on symptoms - sites have been created that can easily guide a person towards most of the easy-to-diagnose problems they are experiencing without any doctor involved. With that said, I do think most holistic medicine is a load of crap. Diagnosing issues is something that we - as a logical group - are very good at doing based on symptoms. That most doctors don't have time to spend 100 manhours on one case is another problem with seeking a regular doctor to diagnose complex issues.

Tichy 16y ago

I think what he can hope for is somebody with similar problems or somebody knowing somebody with similar problems. If doctors who can treat this (or at least diagnose it) are rare, finding the right one could become difficult, and crowd sourcing might be worth a try. Also, maybe the hacker mentality would be to somehow find what is going on by oneself (debugging the body). While I have nowhere as severe symptoms, I have also often suffered from fatigue and sleeplessness. I keep thinking I should keep track of my condition more rigorously to maybe identify the problem. For starters, keep detailed logs (things like foods eaten, exercise, mood, sleep cycles etc) - maybe a pattern might emerge? In fact I hope to write "an app for that" soon.

savemylife 16y ago

Yes, lots of tests. Mostly normal except what I mentioned in the blog- Hashimoto's Thyroiditis (i.e. low thyroid), treated to within normal range using Synthroid and Cytomel. That and "elevated IgA". Quote from doctor: "blood testosterone is normal, blood studies for hydrocortisone, prolactin, red and white blood cells and inflammation are normal. The only other blood study which is not normal is your serum IgA level, which is slightly high." Body temp usually a bit below 98.6 (which I'm told is actually quite normal). Urine is usually slightly yellow.

Vivtek 16y ago
"Slightly high" means it probably doesn't mean a lot. Frustrating.
thaumaturgy 16y ago
IgA is immunoglobulin A, which is likely directly related to your nasal congestion. The elevated levels could either be causing the congestion, or a result of the congestion. Do they give you actual numbers, or just "normal"? I'm always more interested in the actual numbers, rather than someone's interpretation of them. (Even when the someone is a trusted expert in their field.) According to the AARDA, there's no such thing as a test for all autoimmune diseases [1], which is surprising to me. You're probably going to have to submit to a very long series of tests, ruling out one possibility after another, unfortunately. A kind of reverse lottery. And just FYI, I settled on an autoimmune disease for the following reasons: fatigue (common symptom for a heightened immune response); muscle pain (i.e., flu-like symptoms); numbness / loss of dexterity (nerve damage); nasal congestion (classic immune response). Medical diagnosis can further be complicated by co-diseases, or other situations where something causes another series of symptoms as an unrelated side effect. i.e., you start with an infection of some kind, which presents a certain set of symptoms, but then you develop a rotten gut as a side-effect of your body's response to the infection, and then you get distracted looking for IBS, and assume that the IBS-like symptoms are causing the rest of the symptoms. You might try focusing on the possibility of Lyme disease for a while, only because you did test positive for it, and AFAIK it's not a very well understood disease. There are a wide range of symptoms and other problems associated with it, and they can surface years after the initial infection. I think the majority of its effects are incurable but treatable, but I'm not terribly certain about this. The only reason I know anything about it at all is because it's endemic in my area, and there was a possibility that I was infected a few years ago. Good luck. [1]: http://www.aarda.org/infocus_article.php?ID=15 http://www.aarda.org/infocus_article.php?ID=15
- Vivtek 16y ago
  Yeah, there's no way to test for all allergies, either - and autoimmunity is just an allergy to a protein you make yourself. I was shocked to discover this, but there are on the order of 100,000 different proteins in blood, and electrophoresis is the most general test for them. However, electrophoresis can only sort them by weight. So it's useless for antibodies, which are mostly of similar size. To check for allergy to a specific allergen, they take the allergen, attach it to a radioactive particle, glue your antibodies to a plate, and see how radioactive the plate gets when you wash it in the tagged allergen. Repeat for every allergen. Really. Somebody will come up with what I expect to be a nanotechnology-based antibody assay or inventory method and will make a freaking mint someday. It could be you! It could be me! But it's definitely an opportunity that's out there.

cperciva 16y ago

That said: your description of symptoms has all of the hallmarks for an autoimmune disease. So, I assume you've had extensive blood workups done? What are your antibody results from them? Your lymphocyte counts? How's the iron content in your blood? I'd say autoimmune and/or endocrine -- there's a lot of overlap, given how many endocrine conditions involve autoimmune damage. While we're listing blood tests, I'd be interested in calcium, albumin, free T4 (TSH is usually enough to manage hypothyroidism, but it's worth checking in odd cases like this), cortisol, and testosterone. Edit: Comment below says that cortisol and testosterone are normal, and that thyroiditis was "treated to within normal range" -- not clear if this is normal TSH or normal free T4.

neurotech1 16y ago

There is at least one MD who regularly posts here, that I know of. I'm not a doctor myself, I'm an EEG tech. That said, I agree that without specific details, its harder to know whats going on.

megablast 16y ago

The medical field is great at solving simple or common ailments, not so good at more complex diagnoses. I always found it amazing that we even use medical professionals for this, an expert system with a medical assistant would be much superior to the current, for most cases, and I remember being told it has been proven so. However, some cases are just bizarre, that they haven't come up before, or are mostly in someones head, for which there is very little anyone can do. Unless you are rich.

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.

invisible 16y ago

I am a bit appalled by your candor at his serious problems with regard to finding a fix. Medical professionals have utterly failed him for 18 years (half a lifetime for some). He may not find what he needs to take/do and get a prescription from HN, but he may get a great diagnosis (like B12 deficiency due to pernicious anemia) that may end up being true. I think you're putting non-E.R. doctors on a pedestal that more often than not they do not deserve to be on. The fact is that they diagnose based on symptoms - sites have been created that can easily guide a person towards most of the easy-to-diagnose problems they are experiencing without any doctor involved. With that said, I do think most holistic medicine is a load of crap. Diagnosing issues is something that we - as a logical group - are very good at doing based on symptoms. That most doctors don't have time to spend 100 manhours on one case is another problem with seeking a regular doctor to diagnose complex issues.