You are not my doctor. Um, who should be?
August 6, 2017 11:56 PM Subscribe
I'm a mid 40's white male, US, probably somewhere on the autism spectrum. Six years ago, after a progressive neurological collapse, I was eventually diagnosed with paired idiopathic vitamin B12 and D deficiencies. Continuing medical care has been essentially non-existent, often because there seems to be no one who understands the disorder. I would like to talk to someone with understanding of how recovery progresses and my particular case... who would that even be? Snowflakes are thataway...
(I realize that self-diagnosis of ASD is a difficult subject for many. For the purposes of this question, please let's just assume I am what I claim)
So, I was a weird kid. Gifted in academics, but awkward, rail thin, socially oblivious. I got called "sensitive" a lot. I would regularly disappear into a subject for weeks, learning all I could. My family went to great lengths to shame me for being different, I think under the standard male "toughen him up" mentality. The toughening didn't work, but the continuing sense of shame is just fine, thanks.
Sometime in my 30's, I was listening to my dental hygienist describe her son's Asperger's diagnosis, and had the (rather typical, I think) "Hey, that's me!" revelation.
At about 40, my nervous system more or less collapsed. I have none of the standard B12 symptoms: digestion is fine, blood is normal, everything is within range. I got the diagnosis, got the "here's how to give yourself a shot" speech, and... that was about it, really, medically speaking. So I read, and read, and read (yay, science background). And generated my own regimen. And also ran across the perhaps rather tenuous link between B12 and ASD.
I recovered from most of my acute symptoms, but there are many lingering questions. I gained 40 lbs in six months, after a life of exercise having exactly zero effect on me. I have latent nerve damage: cold and heat affect me much more strongly. My nervous system is extremely finicky, many medications (read: antidepressants) have an outsized effect on me.
But the biggest issue has been mental. My deep sense of focus is gone... just, gone. I miss it. I'm often angry for no reason. Understanding other people is, well, easier? Faster? (I don't have to rely on my internal ruleset as much, if that makes sense.) But the sense of shame and anxiety of being socially inept is now almost crippling. I often suffer from week-long depressions and obsess after some social faux-pas that I wouldn't even have noticed in the past.
I've talked to a couple of therapists, it went poorly. One actually said "You just need to man up." Doctors with a more physical focus inevitably know less than I do about the disorder: it's just not common enough. I've never run into a specialist for it. The internet is... well. The noise drowns out the signal, eh?
So, who do you suggest I talk to about this? I'm still me, but I feel like I'm slowly sliding off a cliff, with no rules to tell me how to climb back up.
(I realize that self-diagnosis of ASD is a difficult subject for many. For the purposes of this question, please let's just assume I am what I claim)
So, I was a weird kid. Gifted in academics, but awkward, rail thin, socially oblivious. I got called "sensitive" a lot. I would regularly disappear into a subject for weeks, learning all I could. My family went to great lengths to shame me for being different, I think under the standard male "toughen him up" mentality. The toughening didn't work, but the continuing sense of shame is just fine, thanks.
Sometime in my 30's, I was listening to my dental hygienist describe her son's Asperger's diagnosis, and had the (rather typical, I think) "Hey, that's me!" revelation.
At about 40, my nervous system more or less collapsed. I have none of the standard B12 symptoms: digestion is fine, blood is normal, everything is within range. I got the diagnosis, got the "here's how to give yourself a shot" speech, and... that was about it, really, medically speaking. So I read, and read, and read (yay, science background). And generated my own regimen. And also ran across the perhaps rather tenuous link between B12 and ASD.
I recovered from most of my acute symptoms, but there are many lingering questions. I gained 40 lbs in six months, after a life of exercise having exactly zero effect on me. I have latent nerve damage: cold and heat affect me much more strongly. My nervous system is extremely finicky, many medications (read: antidepressants) have an outsized effect on me.
But the biggest issue has been mental. My deep sense of focus is gone... just, gone. I miss it. I'm often angry for no reason. Understanding other people is, well, easier? Faster? (I don't have to rely on my internal ruleset as much, if that makes sense.) But the sense of shame and anxiety of being socially inept is now almost crippling. I often suffer from week-long depressions and obsess after some social faux-pas that I wouldn't even have noticed in the past.
I've talked to a couple of therapists, it went poorly. One actually said "You just need to man up." Doctors with a more physical focus inevitably know less than I do about the disorder: it's just not common enough. I've never run into a specialist for it. The internet is... well. The noise drowns out the signal, eh?
So, who do you suggest I talk to about this? I'm still me, but I feel like I'm slowly sliding off a cliff, with no rules to tell me how to climb back up.
As I realize I managed to not actually answer the question, in that first part: A psychiatrist. Go to an actual psychiatrist. Don't go to a GP for mental health stuff unless it's just maintenance.
posted by Sequence at 12:35 AM on August 7, 2017 [4 favorites]
posted by Sequence at 12:35 AM on August 7, 2017 [4 favorites]
For mental health, it sounds like a complex enough situation to warrant a psychiatrist easily (tried and failed multiple meds from the sound of things).
Don't expect the psychiatrist to be an expert in vitamin B12/D deficiencies, as they won't be except that it is part of the standard workup they do to look for organic causes of depression. It sounds like if you haven't had good follow up that further symptoms of depression could be related to not being well enough treated for the B12?
An endocrinologist would be the usual specialist to treat someone with vitamin deficiencies if there is something to the situation beyond the standard (and could probably give you good thoughts on why you might have gained 40 lbs, as well). Be sure to get a copy of all your prior records to any specialist you see.
A quick side note too from a doc perspective, when you're "giving a history" as we call it, it's best to try to be as concrete as possible - instead of saying that you had a neurologic breakdown or your nervous system collapsed, (or even that your nervous system is finicky), try to describe what you felt/are feeling - numbness, tingling, weakness? Depression, suicidality, anxiety, psychosis? Your brain and nerves are a complex system and a good description of what you are experiencing can help greatly in localizing issues and making a diagnosis.
posted by treehorn+bunny at 3:46 AM on August 7, 2017 [16 favorites]
Don't expect the psychiatrist to be an expert in vitamin B12/D deficiencies, as they won't be except that it is part of the standard workup they do to look for organic causes of depression. It sounds like if you haven't had good follow up that further symptoms of depression could be related to not being well enough treated for the B12?
An endocrinologist would be the usual specialist to treat someone with vitamin deficiencies if there is something to the situation beyond the standard (and could probably give you good thoughts on why you might have gained 40 lbs, as well). Be sure to get a copy of all your prior records to any specialist you see.
A quick side note too from a doc perspective, when you're "giving a history" as we call it, it's best to try to be as concrete as possible - instead of saying that you had a neurologic breakdown or your nervous system collapsed, (or even that your nervous system is finicky), try to describe what you felt/are feeling - numbness, tingling, weakness? Depression, suicidality, anxiety, psychosis? Your brain and nerves are a complex system and a good description of what you are experiencing can help greatly in localizing issues and making a diagnosis.
posted by treehorn+bunny at 3:46 AM on August 7, 2017 [16 favorites]
One other note: if you have not seen a doctor in 6 years and have been using 'your own regimen' to treat yourself in the meantime, regardless of who you go to see otherwise, you should see your general practitioner/primary care provider in addition - most insurance providers at least in the USA require this anyway to get a referral to a specialist.
posted by treehorn+bunny at 3:48 AM on August 7, 2017 [9 favorites]
posted by treehorn+bunny at 3:48 AM on August 7, 2017 [9 favorites]
I also have had a B12 deficiency. You need to see a gastro doc, because ultimately most B12 deficiency is a gastro issue (celiac or pernicious anemia or hypochloridia) that affects other organs too and will continue to impact your health. They can easily test for those.
You need at least one visit to a knowledgeable rheumatologist to find out if it's autoimmune and to make sure you don't have the common co-morbid autoimmune disease like thyroiditis, celiac or adrenal malfunction. Some rheumatologists don't know about this issue be warned.
And you also need to see a neurologist who specializes in endocrine / neurology stuff to maximise your recovery. That should sort out your hormones which are probably completely whack right now. Just a couple visits should really help.
I strongly recommend not seeing a psychiatrist or anyone who prescribes you mind altering medication until you get your B12 etc under control. A therapist who specializes in helping people cope with complex medical issues would be useful but when you have a disease that one of the main symptoms is how it affects your mood, seeing a psychiatrist is only going to delay treatment and get you labeled with a lot of diseases you don't have.
One practical thing you can do right now is join the pernicious anemia society. It's UK based but they have specialists who will do phone consultations and who actually know what they are talking about. And the forums are decent, better than most. They can recommend knowledgeable specialists in most of the world.
posted by fshgrl at 1:35 PM on August 7, 2017
You need at least one visit to a knowledgeable rheumatologist to find out if it's autoimmune and to make sure you don't have the common co-morbid autoimmune disease like thyroiditis, celiac or adrenal malfunction. Some rheumatologists don't know about this issue be warned.
And you also need to see a neurologist who specializes in endocrine / neurology stuff to maximise your recovery. That should sort out your hormones which are probably completely whack right now. Just a couple visits should really help.
I strongly recommend not seeing a psychiatrist or anyone who prescribes you mind altering medication until you get your B12 etc under control. A therapist who specializes in helping people cope with complex medical issues would be useful but when you have a disease that one of the main symptoms is how it affects your mood, seeing a psychiatrist is only going to delay treatment and get you labeled with a lot of diseases you don't have.
One practical thing you can do right now is join the pernicious anemia society. It's UK based but they have specialists who will do phone consultations and who actually know what they are talking about. And the forums are decent, better than most. They can recommend knowledgeable specialists in most of the world.
posted by fshgrl at 1:35 PM on August 7, 2017
For example I was told I had anxiety. I actually had massive cortisol overload from a messed up nervous system, causing the rapid heart beat, and vocal cord dysfunction, which was one of my neurological symptoms. Both of which showed up out of the blue and went away immediately with treatment. It was EXTREMELY frustrating to keep being labeled as anxious for over a year when I knew I was not. I was getting pretty stabby by the end, I admit, but I don't think that's an actual diagnosis.
posted by fshgrl at 1:42 PM on August 7, 2017
posted by fshgrl at 1:42 PM on August 7, 2017
i'm going to wade in ignorantly but based on my own experience. ASD is still being theorised, the researchers are still fighting over who gets to be the one who came up with the accurate theory, so they each have their own version of what it includes. Simon Baron-Cohen father of Sascha is currently winning.
I was diagnosed after a - big depressive breakdown? - they said 'people with autism can't understand what it is' and 'there are no services in this area for people with mental health problems and autism and you can't have non-autistic ones so you can't have treatment' and that was that. So i have it but i had to work out what it might be alone. Further, all the information is about kids: 'your child may have problems learning to read' helps an adult a lot...
The physical health problem is a physical health problem and you should treat it as such. Despite all the crazy scientifically impossible crap about vaccines (simultaneous onset is because vaccines and asd diagnosis are both done just before school starts, for logical reasons) (don't get me started) and other theories involving the gut and whatnot, i guess you can say someone born with genetic faults is more likely to have other ones than a normal person, so illness should be higher, and there's a hard proven link with epilepsy, but it's a physical problem and for god's sake go to a physical doctor. Autism has nothing to do with it.
A minority of older late-diagnosed asd people, in disagreement with the official stance, claim that severe stress (my friends: rape, a massive epilepsy attack; me: loss of the future) causes 'autistic regression' where a sudden sharp single loss of iq and other faculties takes place. I lost me long and short term memory, iq, imagination and emotions, and all control of my physical reactions eg i can't change blushing, farting other bodily behaviour in public from private, i've lost the ability of my mind to access and intervene in the body's actions, that link is cut. I can't mapread at all now, i used to be perfect at it, totally gone. My example's a bit different from your own but that's what it sounds like to me.
Most/all older-diagnosed people have mental illness, usually severe, and anxiety is pretty much universal amongst us, so don't underestimate the other problems you may have but find out what they might be (ocd, anxiety, dsypraxia, depression and alexythemia (? where you can't recognise your emotions) would be my list of things you should definitely check out. I have always known i was nervous, it never occurred to me that anxiety meant that, anxiety always meant worry to me, but i have severe physical anxiety symptoms eg worried about the train coming in, if it's the right one? Or if the bus will be late? instant diarhea, as if i was a soldier on the battlefield, but with no emotional sensations due to alexythemia. It can take a bit of working out.
As for psychiatry, that's different, not found anything but i live in the middle of nowhere. Psychiatrist=diagnoses mental health problems. Psychotherapist=gets you to talk about the past. Counsellor=listens to you talk about your problems while telling you you're a good person really and you should love yourself more. You have to come up with the solution, any request for insight or comment will be met with 'i'm not a psychiatrist'. I wasted an awful lot of money learning these differences.
posted by maiamaia at 4:03 PM on August 7, 2017
I was diagnosed after a - big depressive breakdown? - they said 'people with autism can't understand what it is' and 'there are no services in this area for people with mental health problems and autism and you can't have non-autistic ones so you can't have treatment' and that was that. So i have it but i had to work out what it might be alone. Further, all the information is about kids: 'your child may have problems learning to read' helps an adult a lot...
The physical health problem is a physical health problem and you should treat it as such. Despite all the crazy scientifically impossible crap about vaccines (simultaneous onset is because vaccines and asd diagnosis are both done just before school starts, for logical reasons) (don't get me started) and other theories involving the gut and whatnot, i guess you can say someone born with genetic faults is more likely to have other ones than a normal person, so illness should be higher, and there's a hard proven link with epilepsy, but it's a physical problem and for god's sake go to a physical doctor. Autism has nothing to do with it.
A minority of older late-diagnosed asd people, in disagreement with the official stance, claim that severe stress (my friends: rape, a massive epilepsy attack; me: loss of the future) causes 'autistic regression' where a sudden sharp single loss of iq and other faculties takes place. I lost me long and short term memory, iq, imagination and emotions, and all control of my physical reactions eg i can't change blushing, farting other bodily behaviour in public from private, i've lost the ability of my mind to access and intervene in the body's actions, that link is cut. I can't mapread at all now, i used to be perfect at it, totally gone. My example's a bit different from your own but that's what it sounds like to me.
Most/all older-diagnosed people have mental illness, usually severe, and anxiety is pretty much universal amongst us, so don't underestimate the other problems you may have but find out what they might be (ocd, anxiety, dsypraxia, depression and alexythemia (? where you can't recognise your emotions) would be my list of things you should definitely check out. I have always known i was nervous, it never occurred to me that anxiety meant that, anxiety always meant worry to me, but i have severe physical anxiety symptoms eg worried about the train coming in, if it's the right one? Or if the bus will be late? instant diarhea, as if i was a soldier on the battlefield, but with no emotional sensations due to alexythemia. It can take a bit of working out.
As for psychiatry, that's different, not found anything but i live in the middle of nowhere. Psychiatrist=diagnoses mental health problems. Psychotherapist=gets you to talk about the past. Counsellor=listens to you talk about your problems while telling you you're a good person really and you should love yourself more. You have to come up with the solution, any request for insight or comment will be met with 'i'm not a psychiatrist'. I wasted an awful lot of money learning these differences.
posted by maiamaia at 4:03 PM on August 7, 2017
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I'm often angry for no reason. Understanding other people is, well, easier? Faster? (I don't have to rely on my internal ruleset as much, if that makes sense.) But the sense of shame and anxiety of being socially inept is now almost crippling. I often suffer from week-long depressions and obsess after some social faux-pas that I wouldn't even have noticed in the past.
Someone I'm close to was recently diagnosed bipolar primarily due to their reaction to antidepressants and a lot of that second bit--it isn't necessarily the "traditional" manic episode but I know this person experienced a lot of their symptoms as anxiety and obsessive thinking more than other things. This isn't to say you're not also on the spectrum, but that seems to regularly come with other problems. This may also be the more standard depression and anxiety, but the fact that you've had trouble with antidepressants before suggest that it might not be.
As far as therapists go, unfortunately there are a lot of terrible therapists, unfortunately. If you can afford to and live in a place where it's viable, I'd try a few more. Everybody I know who's been through that process has some kind of story of someone who really should not have been in that position, but I know a lot of people who've eventually formed really good working relationships with therapists despite that, myself included, and it did me a lot of good.
posted by Sequence at 12:34 AM on August 7, 2017