"Hmm, that's very interesting...or not."

November 29, 2005 8:57 PM

How do you get a doctor's attention?

I'm having lots of problems with my branemeats. (Briefly: A few years ago, I scored an 800 on the SAT Verbal and today I can't think of the word "pencil"; I'm sleeping about 14-18 hours a day and am always desperate for more; I have a constant medium-level headache. None of this is caused by depression, Munchausen's, or hypochondria. I've had all brain-related tests short of a spinal tap, but the only test with an abnormality was a PET scan, which showed "severely decreased metabolism in the temporal lobe.")

Anyway, I originally went to my GP, who was very sympathetic. I've since been referred to a neurologist (awful), a neuropsychologist (nice), an ENT (neutral), a dentist (neutral), and still more specialists. All of them have said "Yes, this is definitely a real problem," but once the basics were ruled out, all suddenly became disinterested -- to the point where they aren't returning calls because they have nothing to say.

I've had doctors tell me that if I were a child, I'd get the attention I need because I'd be a "cause." Unfortunately, I'm 19 and a very busy college student who is not used to being stupid. I'd be down with taking medical leave next semester or next year if I thought anything would be done with this time off.

To sum up: I have brain problems that need attention, and although most of the specialists I've seen are sympathetic, none are actually interested enough to really help. How do I get my doctors to work towards a diagnosis?

posted by booksandlibretti to health & fitness (45 comments total)

Sounds like some kind of aphasia?
I don't know what the answer to your question is though :(
posted by yeoz at 9:11 PM on November 29, 2005

ikkyu2?
posted by nj_subgenius at 9:11 PM on November 29, 2005

if there's a teaching hospital in your area you might be able to find a doctor or clinic willing to work on your case rather than private doctors.
posted by missed at 9:14 PM on November 29, 2005

Not sure how medical insurance works in the States, but if you are worried enough, why not make a trip to the Mayo Clinic? I had a bunch of doctors in Canada throw up their hands when they couldn't figure out what was wrong with me and my subsequent experience at the Mayo was fantastic.
posted by meerkatty at 9:14 PM on November 29, 2005

Oh, sorry -- FYI, I've checked out everything in my small home state. I go to NYU, so I've also been working on this in the city, especially with Columbia, and have pretty much exhausted my options there.
posted by booksandlibretti at 9:19 PM on November 29, 2005

Did you have a concussion? Seriously, I was like that after I had a pretty bad concussion - even up to 6 months later. Any knocks on the head within a few months?
posted by fionab at 9:24 PM on November 29, 2005

I can't believe I'm commenting on my own question again. At least I can blame this on my complete lack of short-term memory.

Anyway, the closest doctors have gotten is a suggestion of idiopathic anomia -- no suggestions of cause or possible treatments or outlined plans or anything useful.

I have also taken some sciencey linguistics classes, so youse guys can refer to stuff like Wernicke's or Broca's, and I'll understand it.
posted by booksandlibretti at 9:24 PM on November 29, 2005

I can email you the name of a neurologist in Florida who totally doesn't specialize in this but that I think you ought to call. hit me at renee dot phillips AT gmail dot com.

I can't even begin to imagine how much this must suck. I hope she (this doctor I kind of used to work for so I don't feel comfortable, you know, giving info about on a hugely public forum) can help.
posted by bilabial at 9:31 PM on November 29, 2005

definitely see another neurologist, or three, even if you have to pay for it off plan. I would try to see one who is a trauma specialist and one who is a disease specialist, as you have no idea what has happened. Even if you haven't hit your head have you had anything you thought of as a neck injury like whiplash? I have a very hard time remembering names and terms for things which I attribute to several mild concussions in my late teens/ early twenties, all of which only "hurt" in my neck when they happened.

Other random I'm-not-a-doctor-nor-do-i-play-one-on-tv thoughts- have you been tested for epilepsy, high blood pressure, anemia? Any reason you haven't had a spinal tap to rule out infection or parasites (traveled abroad recently)? I assume you've had a general physical where they've tested you for all kinds of metabolic disorders?

This must be so incredibly frustrating, I hope you get some answers soon. Can you have one of your parents or a friend come and sit in on your doctors appointments in order to help you remember everything and to help you articulate yourself if that is hard for emotional or medical reasons?
posted by fshgrl at 10:15 PM on November 29, 2005

About ten years ago I had a thyroid problem that all the doctors were convinced was hypochondraical. Finally i took my mom with me to an appointment. She hunkered down and refused to leave until we had an answer. Take your mom (or some other stubborn person who is fantically devoted to your well-being) and prepare to resist the boot.
posted by Sara Anne at 10:33 PM on November 29, 2005

Have you gone back to your GP? The GP's role is to coordinate care services for you.
posted by acoutu at 10:53 PM on November 29, 2005

I'm not sure what you mean by "they don't call back." I think you mean that you call the office leave a message and they never respond if so, have you tried just scheduling appointments? You don't need to actually get through to them to have their office schedule you and perhaps once they realize that you intend to come back every two weeks for the next six months they'll be a little more motivated to treat you.

On the other hand you could ask each of them for the name of a doctor that they feel will have the patience to stick with you longer.
posted by oddman at 11:04 PM on November 29, 2005

These symptoms (minus all the decreased brain metabolism stuff - I don't really know about that) sound a lot like what doctors in the states like to call "Chronic Fatigue Syndrom", which isn't so much a diagnosis as a description of symptoms. Maybe if you go to these doctors with a nameable "disease", they'll be more likely to look into your case a little further. Emails in the profile.
posted by muddgirl at 12:34 AM on November 30, 2005

I see cases that seem similar to yours sometimes. After due diligence is done, brain is MRI'd, various blood studies are checked, careful exam performed, etc. etc., I don't find any hallmarks of diseases that I know about. At that point, it seems prudent to quit wasting the patient's time.

I read Paula Kamen's recent book on her ten-year headache. The moral of the story, which is no secret, is that doctors aren't very good at helping certain folks.

You're welcome to email me; my address is in my profile, down at the bottom. I'm happy to hear your story, even if I can't help; and I am a little curious about how you came to have a PET scan, how it came to be abnormal, and whether the abnormality is unilateral or bilateral.
posted by ikkyu2 at 1:23 AM on November 30, 2005

How to arrange a consultation with Dr. Oliver Sacks. It might be interesting (enough) if your condition were to worsen, or the symptoms become more esoteric. I wish you luck.
posted by Rothko at 2:18 AM on November 30, 2005

If you are on aspartame (ie, you drink a lot of diet soda), stop drinking it NOW. I was terribly ill with symptoms much like yours. It took me a long time to figure out it was the aspartame causing it. For quite awhile, from the seriousness of the symptoms, they thought I might have MS... that was finally ruled out with a dye test.

If you are badly hooked on aspartame, stopping is very painful, far harder than caffeine. But if you're having brain symptoms like that, you need to stay off that stuff.

If you are indeed on aspartame and stopping improves your symptoms, investigate whether you're now allergic to MSG as well. Cross-sensitivity is quite common. I now have to be very careful to avoid MSG in even very small amounts.

And MSG is in EVERYTHING... it's in nearly all packaged foods. It's hidden about fifty different ways under fifty different names. I won't get into that now, since I don't even know yet if you're on aspartame.... but I can post back with some links on how to avoid MSG if you think you need them.
posted by Malor at 2:43 AM on November 30, 2005

This is a more basic suggestion than the others, but ... do you know any doctors personally? If you can get a friend or relative to take some ownership over this and refer you to someone, you might have better luck getting follow-through. Sometimes I find that the only way to get a doctor to listen to me is to have some personal connection.
posted by chickenmagazine at 4:37 AM on November 30, 2005

Big round-up reply:

I brought it to my GP about a year ago. Onset was gradual (albeit on a steep slope) rather than sudden. No known trauma -- definitely nothing I remember.

I don't drink alcohol, smoke anything, or do other controlled substances. I don't go to parties where someone could've slipped something into my drink. Caffeine use is low at best (no coffee, tea, or soda at all, but the occasional bar of non-dark chocolate). I eat pretty well and take a daily multivitamin. I have not traveled abroad. I have traveled pretty widely in the United States, but not within a time period that seems relevant.

I have gone back to my GP repeatedly -- she's the one who referred me to most of the specialists. And I do take my mother, who's a major advocate -- you're completely right, otherwise I'd have a very hard time conveying what I need to.

I'm not willing to go for a pointless appointment every week or every two weeks; I live in the city, and have lots of stuff to do there (like writing giant papers). I can, and do, go home for things like tests or useful appointments, but I am not willing to take time from class for appointments that will be useless.

CFS is a diagnosis of exclusion, from what I understand, meaning that it can't be pinpointed, but also that nothing shows up on any tests. My doctors weren't interested, but I was looking at it -- until the PET scan showed something.

I will be e-mailing you, probably later tonight, if you offered it. I originally intended this to be not so much a "Fix meeee!" question, more of a "Help me get my doctors to want to fix me" question, but that isn't how it's turning out. Thank you all very, very much for your answers. I really appreciate it.
posted by booksandlibretti at 5:26 AM on November 30, 2005

tips that might help from a person who was also passed from one specialist to another with a specific (though different) problem:

How they (specialists) work: each specialist has a checklist of things they look for and will recognize. After they have gone through the checklist and haven't found something in their books they lose interest. It isn't personal, it's just that they have no idea what to do for you.

The important things for you to do in this process:

- make sure you're getting to good specialists - that are being thorough with the testings in their area (maybe mail ikkyu2 to make sure the neurologist did all the relevant testing).
- monitor your problems as thoroughly as possible, so you can describe your symptoms as fully as possible.
- understand your test results. as you go from specialist to specialist, make sure that they are aware of any abnormal results.
- keep in mind that part of the process is finding the right specialist (ask ikkyu2 which specialists he thinks might be able to help).
- (though not for everyone) research. I knew the symptoms and logically searched for a problem that can cause these symptoms. That's how I found out which specialist to approach.

good luck and be well!
posted by mirileh at 5:41 AM on November 30, 2005

Have you thought of a sleep study?

Also, the fact that you are still able to function full-time at a competitive undergrad program ("writing giant papers", etc.) may have more to do with why you are not a "cause" than the fact that you are not, say, a cute little 12 year old. Not to trivialize the problems you are having, but the kind of specialists you are seeing are used to "reduced brain functioning" meaning something far more alarming and severe.

Get a referral for a sleep study (apnea is not just for fat guys), and also try a thryoid doc if you haven't already. (Could it be Lymes Disease, as well?) And PLEASE be sure to follow up here, to the extent that you're comfortable going public with that info. A bit of internet searching will show you that your situation is far from unusual.
posted by availablelight at 5:56 AM on November 30, 2005

P.S. I just checked and noticed you don't have an email posted (I do). I have had many of the same problems (headache, fatigue, memory problems) and am currently in "part 2" of a sleep study to see if that's behind the symptoms. Feel free to email to compare notes if you wish.
posted by availablelight at 6:09 AM on November 30, 2005

I had these same symptoms -- plus chronic pain -- and was eventually diagnosed with CFS. Note that CFS sufferers can have abnormal PET scans. It's true that it's still a diagnosis of exclusion, but things have changed since back when I was dealing with it as a 19-year-old (1990) and was told I was pretty much just "crazy" and "female." There are doctors, I'm sure, at Columbia who specialize in CFS. It might be worth being checked out by them, as they're far more likely to take you seriously than a GP.
posted by youarejustalittleant at 8:18 AM on November 30, 2005

B&L: I'm so sorry that this is happening and that it is so frustrating.

I'll try to limit my answer to your question. It would seem that you are looking for a way to have some doctor (any doctor) pick up your case and walk you through exhausting every possible scenario until an explanation is found. There is a chance that there IS some doctor out there with the time to do case management, but in my experiences, I have found case management to be something that is more and more the responsibility of the patient or their advocate (like your mom). Why is this so?

Well, in terms of keeping all of your visits, conversations, questions and information organized, no one is going to have the ability to do this better than you will. Unless they have a lot of time and do a lot of work organizing all of the paperwork and they have an interest in doing so without extra payment from you. Even if a health care provider DOES offer to coordinate your care, you are the ultimate care organizer for your own case because you are the center of a personal spider web of specialists and information. That has to be very frustrating to hear, especially when you are dealing with so many other things right now.

-Keep records of all of your visits and notes on what each specialist has tested you for and what they have said.
-Ask for copies of test results and anything else the specialists will provide.
-Keep a concise journal/timeline of your symptoms, changes in eating habits, traumatic events, anything that could possibly be relevant and be easily skimmed at a glance.
-Make a "summary of tests and care thus far" (kind of a single sheet that sums up the facts of your case) and take a copy with you when you meet with a new provider to give to them for their file on you. Include the names and contact information of other specialists who have reviewed your case.
-Address your concern that they will portray you as "overreacting" right up front: "In giving you this information, I know that I am risking your perception that I am overreacting. I just want to assure you that there has been a significant difference in how I have been able to (fill in the blank here), I'm beginning to understand that it may be complex, and I want to make the most out of trying to figure out why I have been experiencing the symptoms that I have."

What was my experience with this? I was exhibiting what seemed to be symptoms of MS at a time when I was being taken off of a relatively new antidepressant (an SSRI) that the drug manufacturer assured providers had no withdrawal symptoms. I was bounced around from specialist to specialist. I also did some of my own research. It was complicated. I tried to keep it as simple for my three main physicians as I could, summarizing what others had recommended and putting all of us in touch via email. I worked to remain as respectful as I could of their busy schedules and to not flood them with email. But I was persistent. Finally, I began to find other people on the internet withdrawing from the same drug that I was withdrawing from who were exhibiting similar symptoms. I began collecting these anecdotal accounts. I dug deeper and found that there was preliminary evidence of a withdrawal syndrome for this drug that the manufacturer was not acknowledging, and some doctors who were experimenting with how to lessen the withdrawal effects. It all turned out okay in the end, but those were two of the longest years of life.

Best of luck to you...
posted by jeanmari at 9:33 AM on November 30, 2005

Make sure they did/do a complete blood test for everything. I had a friend who nearly died from a vitamin B12 deficiency, something all doctors before had deemed unnecessary to test for (and they actually still do not seem to believe it, because the symptoms where not that typical and she was young and not a vegan).
posted by davar at 11:16 AM on November 30, 2005

Funny davar mentioned B12. It used to be that only the country quacks gave out B12 shots, but more and more they are being vindicated.

davar is correct. And if you had a B12, but not an MMA (methylmalonic acid) the test is worthless. Clinical B12 deficiency can occur with B12 levels ten times normal, and the MMA will determine whether or not a person has sufficient available B12.

I know it's a long shot, but I could tell you a dozen stories of surreal B12 deficiency presentation, starting with myself.
posted by docpops at 12:14 PM on November 30, 2005

Also, could you please keep us posted on how this is going?
posted by docpops at 12:16 PM on November 30, 2005

Great advice, jeanmari! After re-reading your question, I was about to come here and give you basically the same advice - whether you like it or not, it is now more-or-less YOUR responsibility (or your mom's) to be your health advocate. When my father had symptoms very similar to yours back in the early 90s, my mother began to keep a detailed health diary for him, kept copies of all his test results, etc, and summary sheets of what diseases had been tested for and discounted. Our general practitioner was pretty annoyed with her, but it forced him to pay attention to the fact that my dad was seriously affected by these "causeless symptoms," and that my mom would not rest until a serious and effective cycle of care was in place. It's hard when you have so many other things going on in your life, but your health is the most important thing.
posted by muddgirl at 12:31 PM on November 30, 2005

"Not used to being stupid" ! The gettingbacktonormal tag! Are you me? I've had exactly the same experience you describe, with the additional frustration of having eye-rolling (all male) neurologists suggest that my out-of-the-blue memory problems are caused by "academic anxiety." In my case, psychologists and psychiatrists disagreed, but if you haven't explored this option yet (maybe free of charge through your university's counseling office?), it may be worth a shot.

It's been exhausting keeping my GPA at its pre-onset level; it's almost been like figuring a whole new way to learn. Unfortunatley, that's the only reason I can think of for your (and my) problems' dismissal: as long as the patient can still function at work/school, there's nothing objective the doctor can fix (thus the psychiatric suggestions). I wish you the best, and I too would be interested in any followup. B-12 deficiency, hmmm...
posted by ellanea at 4:20 PM on November 30, 2005

You have my sympathies.

Off and on for years I suffered from mysterious medical maladies, and various docs wrote it off as 'stress' or 'psychosomatic' or 'conversion disorder', even after I had seen a shrink for these issues. But because I was functioning on a basic level, nothing ever really came of it.

Fast forward to this spring, when it got worse. I get a new Neurologist, who shunts me off to a Movement Disorder Specialist (because what I have affects my movement). He sees me a couple of times, decided that it was really a type of Dyskinesia, and now have a plan to treat it. One of which has been eliminating all caffeine in my diet, which had turned out to be a big trigger. Who knew? So, I'm now seeing him once a month, along with a shrink in the same Neurology department, and I'm finally seeing some improvement.
posted by spinifex23 at 5:33 PM on November 30, 2005

This is going to sound rude, but, clearly you can think of the word "pencil". Because ... there it is.

You're functioning as a college student, you're together enough to have a long and detailed discussion here ... clearly, in some key sense, you aren't suffering from the symptoms you describe, at least on the evidence of your posting here.

I'm not saying this to challenge you, but surely, if you're sitting in a doctor's office, talking about this stuff articulately and intelligently, remembering details and so on, but at the same time insisting that you're barely functioning, there's got to be something of a disconnect, which may have the doctors thinking you're exaggerating or imagining your symptoms.

Perhaps I'm wrong, but for me at least, there's a major discrepancy between what you say is wrong with you and your demonstrated ability to think and express yourself clearly and what you say about your continuing level of achievement.

So, maybe you should explain what your outward appearance and demeanour are like, what your daily life is like? If I met you in real life, would I "get it"?
posted by AmbroseChapel at 6:20 PM on November 30, 2005

Maybe that B12 deficiency some people mentioned was pernicious anemia? It runs in my family, is associated with thyroid disorders, attacks the nervous system and definitely causes confusion but generally also agitation and extreme worrying, not sleepiness.
posted by fshgrl at 7:00 PM on November 30, 2005

AmbroseChapel: I'd say it's clear she meant that in conversation she's often been unable to recall that (and other basic) words. And having impeded verbal skills doesn't mandate that you sound like a fool; you can work around it. Plus the other, more tangible symptoms are enough on their own.
posted by abcde at 8:49 PM on November 30, 2005

she meant that in conversation she's often been unable to recall that (and other basic) words

That is possibly what she meant, but she didn't say so. And the other symptoms add up to "I'm tired and I have a headache".

She says she's "stupid" -- what does she mean by that?

I'm really not trying to be combative, but I'm slightly confused that nobody else has asked this basic question.

Everyone's trying to help her with a problem which very poorly defined, or rather, helping her with a secondary problem involving the medical profession, on the assumption that the primary problem has been defined when it actually hasn't.
posted by AmbroseChapel at 9:03 PM on November 30, 2005

I'll cover everyone else's later, but I want to address this derail now.

AmbroseChapel, I'm not offended or anything; I've heard this argument ("if you're still within the broad range of normal, why should we care?") before. I guess I should have described my symptoms better in the post, but I had intended the post to be "How do I get a doctor to be interested," not "Diagnose and fix me over the internets please." Had I been aiming for the second, I would've been clearer about my problems. Anyway, here we go.

My problems are real, and they point to a dramatic change for me. It is true that my current scores on most tests are within the normal range. As my neuropsychologist expressed it, if I had been smoking pot for thirty years, or if I had been only intelligent enough to become a truck driver, she wouldn't be surprised at the scores. However, when she looked at my past performance, she agreed with me that there was a drastic change that needed explanation. If I had a broken leg, I wouldn't stump around for three weeks to see if I could cope with it for the rest of my life; I'd try it briefly, realize I was crippled, and get medical attention.

The day I posted, I had in fact been unable to think of the word "pencil" in conversation. Very frequent loss of very basic words has been constant over the last year, so I have developed pretty decent coping strategies. In this case, I nudged the girl next to me, and I think I said something like "Hey, 'scuse me, I just need to erase something, can I borrow your--" whereupon she probably said "Oh, I think I have a pencil. Just a sec." These workarounds have become commonplace to me, which is why I don't comment on using them. That and the fact that nobody wants to hear "Ooooh, pity me, it took me an hour to do XYZ."

The symptoms that I mentioned seem problematic enough to me. I already discussed the word-finding problems, but the other two aren't enough for you? Sleepiness, whatever. Being forced to sleep for 14 to 18 hours a day for about a year doesn't seem rough enough? You can't get much done in a max of ten hours a day; it's even less when you factor in meals and showers and transportation. Headache, whatever. Having literally permanent pain for over a year doesn't seem like enough to see a doctor about? I don't want to see what you try to do with a broken leg.

But okay, maybe you're a tough guy who wouldn't get concerned until you needed to sleep for 23.5 hours a day. In that case, here's a complete-er list of symptoms: I have hand tremors that are getting progressively worse (this is especially distressing since, before this started, I played classical piano seriously). I am unable to stand with my eyes closed. I am dizzy and light-headed when I walk or stand with my eyes open. My short-term memory is very poor (out the bottom of the normal range). I can't do any mental math, even addition. When I said I was "stupid," I meant I can no longer follow complicated logic or abstract arguments. I have also had some uncharacteristic recurring infections that make me question the integrity of my immune system. Again, I did not mention all this before only because I didn't want this to become about my specific problem; I wanted answers to be stuff like "Here's how I made my doctor interested enough to really help," so it might be useful to other MeFites.

In addition to the symptoms, don't forget the PET scan showed a severe decrease in the metabolism of the temporal lobe. I willingly admit that I have no idea what diagnoses this could lead to, but I'm thinking it implies something other than "lolz, I wanna sleep in today and I'm not as smrt as all the other college kids."

I am not writing all this to ask for pity or to ask for someone to fix me over the internets. I am writing it to demonstrate that there is a genuine problem. I hope this explanation will end the well-meant but misguided derail.
posted by booksandlibretti at 10:03 PM on November 30, 2005

Also, with some illness, particularly immune-system ones, it can wax and wane. Just because a person who is ill may appear well sometimes, doesn't mean that they're well all the time.
posted by spinifex23 at 10:55 PM on November 30, 2005

Thanks for answering that. I realise that I've made you angry, but if I had a point, it would be that you can't divorce the "why aren't doctors taking me seriously?" question from the details of the symptoms.

Let me ask you this: is there anything on your list of symptoms which can't be attributed to stress? I don't know what the PET scan means, but apart from that, I'm sure that's what the doctors are thinking: "Sleep problems? Stress. Problems concentrating? Stress. Headache? Stress."

You're a "very busy college student". So there's the cause of the stress. It's the simplest diagnosis, and unless you want to quit college just for the experiment, it's hard to prove otherwise.

And again, trying to read your doctor's minds, they probably see your insistence that there's something seriously wrong with you as another symptom of the stress.

I'm not saying this because I believe you're not ill. I'm just being devil's advocate. Doctor's advocate, whatever. So it's not a derail. It's a perfectly good explanation for why your doctors don't seem to take you seriously.

How would you get them to take you more seriously? If you eliminated stress and diet as causes, and still had the symptoms, then they'd probably want to do more tests.
posted by AmbroseChapel at 12:07 PM on December 1, 2005

You didn't make me angry, that's the point; it's more just a mild irritation at having to go through the spiel again. Devil's advocate is fine, always.

The PET scan is what can't be attributed to stress. It shows that, uh, something in my brain is not working right. But nobody (definitely including me) understands what it means, so we'll put that aside.

I did try removing the stress, over this summer. I didn't take an internship or anything else. I took an office drone job -- literally carting files from one end of the building to another. It was very low-stress, and I didn't take it home at all. I worked there for maybe 30 hours a week, and I slept a lot, and I saw a bunch of friends from home. No stress.

This semester I'm under more stress than I have been before, probably ever. Blah blah blah 18 credits, extracurriculars, a commute of about 45 minutes, health issues, extra doctors' appointments, whatever. And my symptoms are worsening at the same rate they did over the summer. There's been no sudden drop, not even a change in the slope.

As for diet, what do you want me to eliminate? I don't have much caffeine -- maybe a semisweet chocolate bar a week, no coffee, no tea. Someone cautioned about soda above; I don't drink any soda, diet or not. I don't drink any alcohol or do any drugs (I know, I'm boring). My multivitamin contains 300% of the RDA of B12 (and calcium is needed to absorb it, but I drink ridiculous amounts of milk). My diet also changed significantly between (1) last year, when I ate 90% of my meals in a school dining hall, (2) the summer, when I lived at home and ate my mother's cooking, and (3) this semester, when I eat 25% of my meals in a school dining hall and make the other 75%. I can give you more specifics about the changes (e.g. I ate a lot of egg whites last year, I make a lot of fish this year) if you'd like.

What other changes do you propose to try convincing people -- you, doctors, whomever -- that it can't be stress and diet because although they change, my symptoms don't? Honest question. I'll do whatever needs to be done, so what do you suggest?
posted by booksandlibretti at 7:59 PM on December 1, 2005

Not to keep throwing kerosene on this derail, but...

FWIW, AmbroseChapel, I had the exact same symptoms of the poster and finally found out a couple months ago (courtesy of a sleep study) that it might be related (*sarcasm flag*) to the fact that I wake up 17 times an HOUR. Apparently it's not hysteria, anxiety, stress, etc.--I just can't breathe and sleep at the same time. I'm a skinny, youngish female who doesn't snore, so it took forever to get to this possibility, and it only happened because I was proactive and my GP was sympathetic. Yes, she's still very high-functioning so no one is calling in Oliver Sacks or running a fundraiser, but there is a very real possibility that there is a physical cause behind her symptoms beyond stress and/or depression.

You've made your point--let it go already. Even if you were a doc, you don't have her labs in front of you right now.
posted by availablelight at 8:07 PM on December 1, 2005

Before anyone says, "Maybe difficulty sleeping is a symptom of stress"--it's actually due to obstructive sleep apnea, in my case.
posted by availablelight at 8:10 PM on December 1, 2005

bandl,

I am still curious if any of your doctors checked a B12 and MMA? Your use of a supplement is of no value if you are malabsorbing.
posted by docpops at 7:46 AM on December 2, 2005

I think AmbroseChapel was trying to make a good point, in a somewhat-hostile way. You need to have this description of symptoms ready EVERY TIME you see your GP or a new doctor. You can't say "Oh, I'm sick", because the doctors can't really SEE you're sick. My dad had this problem, too. He's usually relatively fine during the morning hours, when he'd schedule doctor's appointments, so it was difficult to convince doctors there was much wrong with him that couldn't be solved with anti-depressants. A symptoms log and a complete description of what you have tried will help with this. Don't give up!
posted by muddgirl at 8:42 AM on December 2, 2005

My multivitamin contains 300% of the RDA of B12
That does not mean you cannot have a deficiency. B12 is very badly absorbed in pill form, and some people do not have the intrisic factor in their stomach to absorb the B12 from a multivitamin at all.

(and calcium is needed to absorb it, but I drink ridiculous amounts of milk).
That could cause other problems. Milk is notorious for interfering with iron absorption, for example. (and it is not that good a source of calcium, since it contains practically no magnesium and a lot of animal protein.)

It is never good to eat/drink ridiculous amounts of anything, especially if you are not feeling well. You could even be allergic to milk, even though you have drunk it without problems for years.

If you want to look at your diet, you should not primary look at what to exclude, but what to include (lots of fruits and (green) veggies). But honestly, that was not the point of my comment. The point was that you should test your blood (not just for B12, but if you do, make sure you get the right test, like docpops said), and not assume that something cannot be the problem, for example because you take a multivitamin or because you think you eat a healthy diet. Get your blood tested thoroughly.

I really hope you'll find a better doctor who is able to help you.
posted by davar at 1:06 AM on December 6, 2005

Slight derail: I've never seen a case of isolated dementia from B12 deficiency. I've also never heard of such a case. I've seen more than a dozen textbooks that say you have to check for B12 deficiency in dementia, but I can't find a single primary reference in the literature. (Many persons with severe alcoholism and B12 deficiency have dementia; if this were truly B12-related, you'd see it in pernicious anemia too, which you don't. So I think those folks probably have Wernicke-Korsakoff encephalopathy.) Some persons with subacute combined degeneration of the cord become demented - after they're quadriplegic. Not before, I think.

Do you know otherwise, docpops?
posted by ikkyu2 at 5:32 PM on December 6, 2005

ikkyu2,

Your assessments make sense and I fully admit that my pleas for an MMA may seem like the rantings of a B12 True Believer. I can't imagine dementia occurring in SCD until a person were essentially noodled.

In this case, I'm [sort of] ignoring the PET scan, because god knows what the hell that means. It could be like finding a disc herniation in someone with chronic lumbago - we know up to half the population has an MRI riddled with anomalies ten years after they walk upright.

B12 deficiency presents in such cryptic ways that it's hard to discount it unless you first establish it's absence. I'm walking proof of that.
posted by docpops at 2:35 PM on December 7, 2005

docpops,

I'd be interested to know more about cryptic presentations of B12 deficiency; if you cared to email me, my address is down at the bottom of my profile.

For reference, I emailed back and forth with the OP a few times, and I don't think I was able to add anything.

PET scans are difficult to interpret at the best of times, and as it happens, I am familiar with the facility where the OP's PET scan was performed and read; in isolation I don't give the result very much weight.
posted by ikkyu2 at 6:42 PM on December 7, 2005