What to do when doctors go bad?

April 3, 2007 12:12 AM

I suffer from a disability unrecognized in this jurisdiction, and in most places. I now find out that several doctors missed something important, I think, and I feel very let down and not sure what to do or who I could possibly trust to help me in an objective sense.

I suffer from chemical sensitivity, aka multiple chemical sensitivity or MCS, an unrecognized disability in this province, IE doctors just dismiss it and are unhelpful. I went to a neurologist and an occupational health specialist as well as an allergist. All useless. I took care of myself by removing myself from the poisonous environment (and my lucrative job, since neither the school, the union nor the students seemed able to fully accommodate me.)

Today, I just stumbled upon this stroke prevention site while researching something for someone else, which lists severe symptoms that I reported occurring in response to chemical exposures (overwhelming perfumes in a room with poor ventilation), to all those doctors. These symptoms scared the hell out of me. I am not very medically knowledgeable, but I expected the damn doctors to be! I experienced one instance each of these: (1) Sudden confusion and the inability to understand what others are saying. (2) Sudden loss of ability to speak (form sentences). (3) Sudden (extreme) change in vision in one or both eyes with (4) Sudden, (extreme) unexplained dizziness. These were terrifying, though they lasted less than half an hour each.

I haven't had them since, but I feel scared to risk having them again. I was hoping to go back to university maybe and do some traveling, but those now seem potentially dangerous. I feel like a prisoner. I don't know where I could get any guidance on how to proceed. (PS a bad doctor killed my closest, dearest relative, so there is not much trust there either. Even less now, if that's possible.) One of my parents had bad strokes that resulted in similar but permanent language problems later in life. I'm scared.

posted by Listener to health & fitness (50 answers total)

Continue being an advocate for yourself... You must insist that your concerns/complaints are listened to and believed... It's a hard fight (I know, because I've fought for two of my children with medical problems), but ultimately YOU are the only advocate you've got... Stay strong, and be heard... Good luck.
posted by amyms at 1:24 AM on April 3, 2007

Neurological symptoms can arise from a lot of things, but while they can seem very similar, there are important differences depending on the cause. The damage that occurs to the brain during stroke is severe, and the symptoms that result from it last a long time (well over 24 hours), because it takes a long time for the cells to repair and reorganise themselves. This is why I think it's unlikely you had a stroke. It seems that you know the trigger for these feelings anyway - the overwhelming fumes. All the more reason to believe that you haven't had a stroke.

There are a few other things that can cause those problems.

It could be immunological. If you're immune system was attacking your central nervous system (a condition known as multiple sclerosis), the symptoms would last longer. It is possible that your immune system is reacting to something else (some biological or chemical toxin) somewhere else in you're body, and the "fallout" from this response, but in such a case you would probably feel a number of other symptoms (headaches, nausea, muscle pain...).

It could be cardiovascular. If the performance of your heart temporarily dropped, the subsequent drop in blood supply to your brain could also explain those symptoms. However, you would've also felt short of breath, and may even have felt you heart beating really fast (see palpitations).

It could be chemical. Some toxin that directly affects your nervous system. This would have to get into your blood stream to do that, which means inhalation, injection or ingestion of the chemical. This even seems possible given the circumstance you described, although one would expect these symptoms to be reproducible upon re-exposure to the same toxin. And I think this is where the medical community gets caught up regarding MCS. If you can pinpoint a single chemical, no problem. But MCS sounds like fibromyalgia and chronic fatigue syndrome. i.e. diseases that only get diagnosed when everything else is ruled out. And they hate conditions like that, because there's no way to treat them.

It could be idiopathic, which is a dumb doctor way of saying there is no known cause. This is also possible - my father seems to have a problem with some sort of chemical exposure to his hands. But he neither he nor the doctor could ever work out what chemical it was, because they seemed to flair in a completely un-reproducible manner. I think it's an allergy of some kind (he used to suffer eczema), but dad's insistent that it's a chemical thing - but that's just my dad, always insisting that it's his environment, and there's nothing wrong with him.

The final possibility is that it's psychosomatic. You have described short-lived neurological symptoms that are very difficult to examine, and doctors rely on signs, things that they can see for themselves. When they don't see anything, they assume something is psychological. Stress is the number one scapegoat for unexplained conditions in Western society today. It's another way of the doctor saying "I don't know what the fuck is wrong with you", without having to use the words "I don't know". The problem is that you can't rule out psychological factors, so I think you have to consider panic attacks and the like. I've had a similar experience making up a paraformaldehyle solution - I copped a couple of lung-fulls of gas and was convinced I was going to die (paraformaldehyde is a very nasty chemical). Light-headedess, blurred vision, inability to breath, the works. But it turned out the dose I had was so small it couldn't have done any of it. It was a panic attack, and everything was in my head. So keep your mind open to the possibility of psychosocial triggers to your symptoms (i.e. feelings, events, thoughts, memories etc. that you may experience immediately beforehand).

I really don't think you're in danger of having a stroke right now (no more than than the rest of us), and you needn't restrict your self from your daily living habits. As far as I see it, the only danger would be if you were behind the wheel, not sitting in a lecture.

It's an unfortunate thing, but there are still conditions out there that doctors have no idea how to diagnose, let alone treat. But have faith, research pushes ahead all the time, and new things are always being discovered.

btw, I'm a big fan of people who go mack to uni, and definitely think that this shouldn't stop you from doing that.

PS Am not a doctor but I play one on TV, am a scientist.
posted by kisch mokusch at 2:01 AM on April 3, 2007

...and the "fallout" from this response is causing the symptoms you describe, but in such...
posted by kisch mokusch at 2:04 AM on April 3, 2007

Ugh, back to uni. Spell-check didn't pick it up because apparently "mack" is a real word - it means either a raincoat, or, strangely enough, a pimp.
posted by kisch mokusch at 2:19 AM on April 3, 2007

Okay, so I just did a bit of reading, and while I still don't think you had a stroke, you can't rule out a transient ischemic attack. I know you don't trust doctors, but I would really advocate going back to your GP with your fears and get some more tests done. Like amyms said, you are the only advocate you've got. Insist on the ECG and even the MRI if it will help bring you the peace of mind you need to get on with your life.

Oh, and be aware that you're GP will pass you on to a specialist for an MRI. He/she's not palming you off, it's just the way things are done.
posted by kisch mokusch at 2:36 AM on April 3, 2007

It's not just your physicians who don't take MCS seriously:

"[MCS] has been rejected as an established organic disease by the American Academy of Allergy and Immunology, the American Medical Association, the California Medical Association, the American College of Physicians, and the International Society of Regulatory Toxicology and Pharmacology. It may be the only ailment in existence in which the patient defines both the cause and the manifestations of his own condition." (Gots quoted in Magill and Suruda, American Family Physician)

So I'd imagine most physicians will have a similar response. Not all, though. What I would do is seek out a physician who has a good track record of treating cases that patients have identified as MCS. Google for ["multiple chemical sensitivity" "support group"] to find some suggestions on how to do this.
posted by grouse at 3:42 AM on April 3, 2007

Also be aware that "psychosomatic" does not mean "nonexistent" or "just made up" or "not serious" or "playacting" or "attention getting" or "all in your head" or any of the other dismissive pseudo-meanings too often attached to the word. It just means that whatever genuinely alarming and unpleasant bodily experience you've just had was triggered by something that happened in your brain - something within the bounds of normal brain function, rather than a stroke or a seizure.

A psychosomatic experience is every bit as real as a chemically triggered one. In fact, you could well say that a psychosomatic reaction is a chemically triggered experience - it's just that the chemicals concerned are released internally.

MCS is interesting because its symptoms mimic, to such a large extent, the symptoms of other conditions - such as phobias and panic attacks - that are not necessarily caused by exposure to chemicals. It's also interesting that many well-established treatments for panic and anxiety disorders also show good results when applied to MCS.

If a doctor tells you that what you're experiencing is psychosomatic in origin, don't automatically take that as dismissive; take it as one possible avenue to explore for getting effective treatment.

Of course, if a doctor tells you that what you're experiencing is "merely" psychosomatic, offers you no suggestions for dealing with it and gives you the impression that they believe there's nothing "really" wrong with you, you need to find a doctor who isn't a dick.
posted by flabdablet at 4:31 AM on April 3, 2007 [2 favorites]

It sounds as if you're understandably distressed about your medical condition. I have no idea what you should do about it.

I would suggest, however, that you present an unconvincing case that those doctors did anything wrong when they treated you. That they did not come to your conclusion about what ails you is evident, but it sounds as if that is leading you to determine that they also missed, well, what exactly? Do you contend you had a stroke but that they missed it? Do you contend that you had stroke like symptoms and they didn't do a stroke workup?

Unfortunately we have no idea how you described your symptoms to your docs. It's likely that you described the symptoms in a way which ruled out a stroke. In other words, the descriptions of isolated symptoms that alarm lay persons reading the internet can mean very different things to professionals given context and other patient-supplied information.

Your time would be much better spent on seeking useful treatment for whatever conditions it is that you suffer from. By your count you visited three doctors for this, which doesn't seem like very many given the life changing nature you describe of the problems you don't describe. Unusual medical conditions are frequently elusive and difficult to diagnose.

Good luck.
posted by OmieWise at 4:52 AM on April 3, 2007

IANAD, but that 1-2-3-4 sounds a bit like 'panic attack' to me as well.

Which is not directly helpful to you, but.

In my experience -- this with sleep problems, not what you're describing -- one has better luck with doctors and those 'could be psych(something)' problems if one sees a psychiatrist and gets a clean bill of health there before aggressively pursuing the physical side of it.
posted by kmennie at 6:10 AM on April 3, 2007

You could be having a form of epilepsy in fact that is what I was thinking as I was reading your stuff. Migraines which can include auras--some serious, some forms have been linked to epilepsy and include some of those symptons you talk about.
You could be having Opathamological migraines which DO include visual effects some pretty serious and migraines are known to be triggered by chemicals. Ditch the MCS label when you go to doctor, find a neurologist and just present your symptons.
posted by Budge at 6:33 AM on April 3, 2007

I'm so sorry about your illness.
I used to work for a store that sold chemical-free products for MCS sufferers, so I have read about MCS a little... (You probably already know all the stuff to do to keep your environment at home chemical-free, but if you're interested, I think I wrote an article about it once.)

Unfortunately, I really don't know what you can do. I really don't think there are any doctors except perhaps naturopaths (sp?) who recognize MCS. I have read lots of stories like yours. It's simply not a condition that the established medical community is able or willing to recognize and treat. There may not be a treatment.

As far as I know, all you can do is control your environment to the best of your abilities. There seems to be some consensus that MCS is caused/exacerbated the more you're exposed to chemicals and fumes. I think it is an exposure to the sum total of all the chemicals in your environment, not one chemical in particular. So perhaps if you made your home environment completely chemical free and allowed your system to get a break and "rest", you would be able to still go back to school, if it was just a few days a week.

Good luck. I know it's tough, hope you feel better.
posted by crackingdes at 6:33 AM on April 3, 2007

You should consider a naturopath, unless you specifically find an MD who will take an interest in your situation. Your post indicates beyond any doubt that you are incredibly skeptical, possibly hostile, toward allopathic medicine, and so any constellation of symptoms that you take to an MD, for which there isn't an objective, 100% accurate test to prove or disprove a cause, will result in a further stand-off and reinforce your feelings that you are taking on a monolithic, didactic entity.

You need to determine whether you want to see a practicioner that will reinforce your belief that you are suffering from an illness, thus assuring a lifetime spent at the whims of your olfactory system, every day further constricting the range within which you allow yourself to exist, or put aside your biases and sit down with a practicioner of objective science and consider all the possible options. So far you have determined a differential based on internet research, thus bypassing in a few minutes or hours the judgement of someone with likely a decade or more experience with illness.

Lots of environmental stimuli produce physical symptoms. Sound, sight, smell - can all cause heightened arousal, disturbances of sensation, anxiety, disorientation, and other symptoms of distress. One name for that could be MCS. Now what? You have a disease. And you get to spend your life focussed on that disease and it's various implications. For some people that is a preferable path.
Another view to take is that you are as normal and human as the next person, albeit with a heightened sensitivity to certain stimuli, and you incorporate that into your day to day life no more or less than you do any other facet of your self-awareness, but with a far different outcome in the long run. But since you already refer to yourself as having a disability, I suspect the die is cast.

Good luck.
posted by docpops at 7:15 AM on April 3, 2007 [4 favorites]

All the things on that list sound like migraine symptoms. Given that migraines can also have environmental causes could it be that? Have you ever had nausea as aprt of an incident? Numbness in extremities/face? (These are also potential migraine symptoms, though you could have not had them and still had a migraine.)
posted by biffa at 7:18 AM on April 3, 2007

One of my roommates in college experienced, all at once, the four things you described + numbness in her face one afternoon when she was particularly stressed out, working on about 4 different term papers all due that week. She experienced these symptoms, became extraordinarily disturbed by them to the point of having an additional panic attack, and we rushed her to NYU Hospital. She was diagnosed with an opthamological migraine.
posted by infinityjinx at 8:14 AM on April 3, 2007

Yes, there are a couple of diagnoses here. Docpops correctly points out the one that's going to do the most harm to your health over the long run - afidelitas doctoris, you don't trust doctors. I can't help with that.

That aside - kisch mokusch, what a great outpouring of nonsense. Are you trying to frighten the poster worse than he already is? The history given, as clearly as you could ever wish, is that of perfumes in a confined room triggering sudden, brief, transient, stereotyped neurologic deficits. I'm not going to talk about the original poster's case - I'm not his/her doctor - but I can talk about myself; something similar happens to me. In my case they're called complicated migraines, and they're treatable. (I've asked my girlfriend to move her perfumes to her home office, and not to spritz herself until she's just about to leave the house! Once you've had even one of these very unpleasant spells, you'll do just about anything not to have another.)

There are a lot of names for migraines that come with funny neurological symptoms attached. Some of these migraines, like some of mine, don't even cause headache, in which case they're called acephalgic migraine.

My advice to the original poster: go find another neurologist. Leave the distrust, and the bizarre syndromes you Googled up on the internet, behind. Talk about your symptoms, your concerns about your symptoms, their implications for your future health, and your desire to treat them (or not to treat them.)
posted by ikkyu2 at 9:35 AM on April 3, 2007 [2 favorites]

Also, another couple of things occur to me. There are a few code words that patients can use that can make a reasonable doctor temporarily ignore the prospect of helping someone get better.

One of these words is "disability." If all you're interested in is a monthly government check, you are on the wrong track. You need to pick a common disability that every doctor recognizes, and stick to it. Doctors call the monthly government check that comes with illness "secondary gain." The presence of secondary gain is harmful to patients. It makes them stay sick. I do not mean that patients feign illness in order to get a check. I mean that the presence of secondary gain makes patients remain physically ill, despite the best efforts to help them. So if you're really fixated on being disabled and getting your monthly check first, and getting better second or not at all, doctors realize that they're not going to be able to help you.

Second, you put 'malpractice' up in your tags to this post. No doc wants to commit malpractice. Most docs don't even want to think about malpractice. If you're starting off your interactions with doctors, the way you started off your interaction here, by threatening them with malpractice suits, you have changed the usual interaction dramatically. To a lot of docs, the usual "How can I help this patient?" changes immediately to "How can I quickest get rid of this patient and never have to see or hear from him again?" This is just one of the many ways in which the old afidelitas doctoris is directly harmful to your health.
posted by ikkyu2 at 9:57 AM on April 3, 2007 [3 favorites]

I have been afraid to read the responses here but so far I got someone else to read them for me and so I thank you for your efforts. I will have more time later today to read them. In my freak-out when I posted, I missed adding this link about transient ischemic attack. Obviously, I didn't have a stroke, but this type of attack does seem to be what I had and it definitely was triggered by the chemicals and air quality at that time.

Also, ikkyu2, I debated putting malpractice up there. There was malpractice for my brother and I thought it was an obvious tag for future reference if a person wanted to find the thread. I guess it would have been better to put it on after, because I knew that people might think I was overstating concerns with level of care I got.

Disability? No thanks. They pay a fraction of what I make using my existing skills working from home, despite my disability, anyway. I'm not fixated on anything, and inflammatory language like "fixated" leads nowhere. I am not a sit back and take it victim type, but the fact is I do have a disability that limits me in ordinary life activities. That sucks.
posted by Listener at 12:50 PM on April 3, 2007

Kisch mokusch, thanks for the TIA link. That is exactly what I felt the doctors should have recognized and advised me about!!! They did not seriously evaluate or consider serious symptoms. Sure, I have low blood pressure, low cholesterol, etc, but my body does weird scary things that puzzle the doctors fairly often, it seems. They often think the equipment is broken because I register zero or very low on things at times. So many times they look puzzled and walk around to make sure some unit is plugged in or they get another one and try again and seem surprised to get the same reading. It's weird. I'm some kind of medical freak, it seems. So, no wonder I don't fit in their categories. (Glad I don't have any nice easy to ID tumours or anything, though.)

Sure, doctors just want to get the patient out, Ikkyu, if they pre-judge, maybe if they don't like a person. Well, I'm not a very likeable person, apparently, but they are a professional and owe me proper listening and response, dammit. Ikkyu, I LOL now to think of me going in to a doctor and saying the word malpractice. No. Never even thought it. And you will see that I also didn't threaten malpractice here in my post, but you jumped to a conclusion.

I don't go to the doc and say "it's a migraine" or "it's an allergy" or "it's asthma" (had an asthma test, too, I now recall.) but my family doc sent me to different things to try. Reaction starts in throat and lungs, worse one goes to brain. Sorry to all that I wasn't clear earlier.

I've had many lesser reactions, before and since. Avoidance helps. I really don't get hung up on terminology. I don't care what label they use, including psychosomatic. I just want something that works and to have some general idea why it works, or honesty that they don't know why. If I wanted to go to a faith healer, I would, but I don't. Similarly, I used the MCS label because it is the most common one, not because I label myself. Thankfully, more and more places are aware that strong perfumes and stuff are irritants. The Lung Association has signs now that I see up in most hospitals and clinics I have been to in the past year or so. So awareness is raising, which is good.

MCS groups -- yeah, I have talked with a lot of people having varying versions of these issues and there are so many kooky alternative medicine things I don't even want to go there. Just extreme weird stuff. I don't trust that. I did lots of research in the past and found nothing that made sense. Avoidance, only made sense, and stopping taking the nose and throat sprays that suppressed the lower level symptoms. It was only then that I started getting the brain symptoms -- I believe because my lower level warning systems could not kick in to protect me by making me absent myself from the situation.

biffa, thank you, yes, one episode I had was identified by co-workers as a migraine. I don't like to think of medical stuff and I just like to play healthy (organics, exercise, no smoking or drinking) so I am really not aware of medical stuff in general. I had weird grey zigzags in front of one eye and I was falling over (that was the worse imbalance/dizziness episode.) However, I quit my job 2 weeks later and the symptom relief drugs and never had another "migraine." The neurologist wanted to "experiment" (his word) with some drugs for migraines. No thanks. I'm sensitive to drugs too. They fuck me up, so no experimental ones, I just take normal stuff, when really needed.

Omiewise, I described my symptoms as in the numbered points (classical TIA, it turns out) but that they were triggered by chemicals. I never mentioned MCS because I know it is not recognized (ie understood and codified) by the medical establishment.

Ikkyu2, thank you for the "complicated migraines" term. I guess you know in part what I'm talking about. My quick google says that term isn't used any more. You say it can be treated, though. How?

It is scary to be driving with some stinking friend of my mum (foolish past politeness) with clouds of perfume and suddenly I don't know how to get home any more and it's all I can do to stop the vehicle. So I do have to walk out and avoid stuff. Maybe if I just avoid, don't ever use the sprays (I had forgotten about that factor when I posted, because I didn't think about it very long) and just keep walking out, I will be okay and can go back and study, and walk out as necessary.
posted by Listener at 1:31 PM on April 3, 2007

>I have been afraid to read the responses here but so far I got someone else to read them for me and so I thank you for your efforts.

You sound neurotic and panicked to me, and more than a bit paranoid. Please do not rule out psychological help. Its very common for people with mental disorders/issues to google up every little thing, self-diagnose, and make matters worse for themselves. I second finding a specialist and not mentioning your self-diagnosed illnesses. If that doesnt work and another set of doctors can't find out whats wrong with you its really time to see a therapist or a psychiatrist. Clutching to some obscure disease and demanding that there's nothing psychologically wrong with you is a very much a typical sign in mental illness.
posted by damn dirty ape at 1:33 PM on April 3, 2007

I apologize for posting when freaked out, and thereby not being clear. I suck at medical stuff, so I was trying to use terms like MCS that capture a lot. Captured more than I bargained for.

Anyway, I go to the doctor, tell her that chemicals and scents of many unidentifiable kinds bother me, make my throat itch, mouth feel waxy, get sneezing and worse. And I remove myself, but can't always do that. It's not every perfume, not every smell, sometimes things with "no smell" like dryer sheets. Solvents, definitely. Historically, it seems it started when I got exposed to some solvents at work. My respiratory system became very reactive. I had several bronchitis incidents that dragged on forever. The union did an air quality study: we had no oxygen, it turned out. I found out there was a metals lab over my classroom and I thought that explained these strange strong dizzying solvent odours I sometimes experienced. I got a new classroom, but I had sensitivity to all kinds of things now. My nose and throat would just fill up. It was almost explosive reaction. Then the sprays. Then the brain effects. Then I got the hell out of there before it got worse, and created a new life for myself.

That's the whole story. See why I just said MCS instead?
posted by Listener at 1:56 PM on April 3, 2007

The neurologist wanted to "experiment" (his word) with some drugs for migraines. No thanks. I'm sensitive to drugs too. They fuck me up, so no experimental ones, I just take normal stuff, when really needed.

You want medical attention, yet you're going to refuse what people have to offer, so you're sort of setting yourself up for perpetual 'disability.' Medicine is a field of science, and every attempt at treatment with a medication is always an 'experiment' to a certain extent, particularly when you're treating a rare or hard to pinpoint disorder.

As others have suggested, acephalgic migraines are certainly high up on the list of possibilities, but it sounds like it's going to be very hard if not impossible to do a satisfactory workup that's going to label you with any disease to your satisfaction. Failing this, you're sort of stuck with either trying to maintain trigger avoidance, or empiric medicinal treatment for the likely causes of your problem. That means, yes, 'experiment.' It means weighing the purportedly disabling effects of your situation as currently stands, with the possible side effects of a medication that may or may not help, and making an educated decision. If this puts you back in the mindset of 'no thanks!' then I gently suggest that you not waste your time any further looking to allopathic medicine for an answer.
posted by drpynchon at 2:10 PM on April 3, 2007

Have you considered that you may just be a hypochondriac?
posted by pieoverdone at 2:21 PM on April 3, 2007

Listener, it can be treated by a neurologist. Since I happen to be one, I will not undertake to give you treatment advice over the Internet, for your own protection as well as mine.
posted by ikkyu2 at 3:11 PM on April 3, 2007

Oh, I see that a neurologist already offered to do this.

Every course of treatment is an experiment. Your doc wasn't saying that he was going to give you a medicine that has never been used before in anyone; he was saying that he wanted to try some of the commonly available remedies to see if they worked in you. The reason doctors put it that way is because we know that not every medicine works for every patient. We don't issue a guarantee that the medicine is going to work. Instead, we say, "Here's a medicine that has worked for people in the past. Let's try it and see if it helps you."

If you're looking for a guarantee that the treatment is going to work, you're going to have to abandon doctors entirely. That just ain't how we roll.

Seriously though, your level of worry about your doctors and their intentions isn't normal and it isn't healthy. I'm concerned that it's interfering with your ability to get the health care you need.
posted by ikkyu2 at 3:18 PM on April 3, 2007

Ikkyu, maybe another neurologist won't be such a stinker as Collins in Kamloops was. I quoted one thing. You weren't there to see the rest of his bullshit. He didn't explain too much about what and why. Basically, it made no damn sense to try flunarizine with no explanation except "nonspecific symptoms - no clinical diagnosis." (I just found this scrawled note of mine while cleaning out files the other day, such a coincidence.) He was an arrogant shit. In my work I have come across the odd doctor that seems excellent. I will seek them out when I go for further counsel some day, when I move back to civilization, where they are located, not in this backwater. I appreciate the comment from a couple of people that 3 or 4 specialists isn't exhaustive. Thanks. Seemed a hella lotta doctors to me.

You seem to think this can be solved. Great. I hope someone in Canada thinks so, too. Your country has a much larger population base and a bigger kettle for more cream to rise to larger top.

I think my "worry" or freakout that doctors missed something so bloody obvious in hindsight is completely healthy and natural. I just shouldn't have posted while freaked out. Trying drugs with no understanding of what and why is ridiculous.
posted by Listener at 4:13 PM on April 3, 2007

Skill in the care and feeding of doctors must needs become a preoccupation of the chronically ill, Listener, and yours, to judge by the reactions just of doctors in this thread, is sadly underdeveloped. Ikkyu2 has offered you excellent advice-- virtually a program for getting what you require without injuring your dignity or compromising your integrity; failure to follow it or something like it would seem to leave little alternative to the future docpops predicts for you of "a lifetime spent at the whims of your olfactory system, every day further constricting the range within which you allow yourself to exist...", because, for the dozen or so people I know well with illnesses very like yours, only those who have gotten better have been able to avoid getting much worse.
posted by jamjam at 5:47 PM on April 3, 2007

Not sure what you're referring to, jamjam. Ikkyu had lots of insulting comments I tried to ignore, but basically I don't want to treat symptoms again when they have no idea what they were dealing with. Last time, that only led to increased problems.

I'm not chronically ill. I'm healthy when I stay away from poison. The doctors can't explain it any better than that.
posted by Listener at 5:50 PM on April 3, 2007

I'm still not understanding exactly what it is that you want out of this. If you do have MCE, then what? What would your ideal doctor do about it?

Also, MCE isn't really recognized by medical professionals, it's not a clinical diagnosis, but a set of symptoms, so I don't understand how what your doctor wrote was wrong.

From your responses, I feel like what you want is for the doctor to tell you something like "these smells will indeed give you a stroke, here is a magic slip of paper that will force everyone not to expose you to chemicals". (I might be off on exactly what you want, so please correct me, but the specifics aren't the point)

I feel like anytime a doctor tells you something other than what you want to here, you assume they're wrong and move on to the next one, and until you find a doctor that confirms your paranoia that this is extremely dangerous/fatal, you won't be satisfied.

I'm not trying to snark, but wanting to get better is a really important step in getting better. For example, in the US many pain clinics won't accept patients who are still in litigation and thus could could gain something from being in pain.
posted by fermezporte at 5:53 PM on April 3, 2007

fermezporte, I haven't been to a doctor for this in several years. I have just circumscribed my life, but I am wanting to get out more and do a few things. I think the suggestion to try again with other doctors is good. That was helpful.

MCS or environmental illness or whatever must be SOMETHING, but they haven't figured it out yet. I once found something about epithelial layer damage and transfer of chemicals to the brain by vagus nerve or something, but lost that article. Too bad. But I expect a mechanism or mechanisms will be found, if we don't bake the atmosphere first.

I was offered migraine drugs but nonspecific diagnosis. That does not add up, and drugs never work normally with me. I have a long history with that, just the way it is. Maybe in a few years as more and more people obviously are having this problem, some knowledge will arise. Not having poisoned myself by shooting my physiological messengers (warning symptoms) will allow me to benefit from what is found. I will seek further medical counsel, but I will protect myself when I go back to my old uni for a second degree, by walking out as needed.

In other words, to answer your question, fermezporte, as indicated by the check marks, the question is basically answered, but I didn't want to close it yet in case any genuinely helpful people had any other comments.
posted by Listener at 6:09 PM on April 3, 2007

kisch mokusch: "But MCS sounds like fibromyalgia and chronic fatigue syndrome. i.e. diseases that only get diagnosed when everything else is ruled out. And they hate conditions like that, because there's no way to treat them."

Yeah, but I've recently seen that nut cracked, I think. Inflammation runs in my family. Arthritis x 1 and fibromyalgia x2 which has several variant names. The one who fixed that problem did so with low inflammatory diet and insane amounts of low intensity exercise. I found a great site about inflammatory problems recently, when an old injury flared up with excruciating inflammation and I was looking to understand a bit about it. See, this woman went to 50 doctors (shudder) but she solved it mostly with very targetted nutrition stuff. I'm going to try some of her tips to deal with the family weak point. It would be wise if doctors would use more of the body's ability to heal if given the right natural resources, I think. "Eat right and be generally healthy" isn't quite enough in all cases. Who's the Canadian Andrew Weil, then? Cuz I'd like to go to him. Someone who knows both sides.
posted by Listener at 6:35 PM on April 3, 2007

Damn my postathon here. Excellent MCS resource by the same woman I mentioned in my previous installment. Posting this here for the benefit of anyone who might search this in future.
posted by Listener at 6:39 PM on April 3, 2007

I'm healthy when I stay away from poison. The doctors can't explain it any better than that.

"Doc, it hurts like hell when I do ..."

Goddamn Listener, so in other words your family members with their unnameable, untreatable, undiagnoseable maladies got better through better nutrition and exercise. Why isn't that enlightening and satisfying enough for them/you? What is it about humanity that makes them immobile to address their health without first entitling it?

You want diagnoses? Try ALS. Try diabetes. Try multiple myeloma and Alzheimer's and morbid obesity and sepsis. MCS is a name for people that aren't content until they can claim victim status. The link you referenced is a cringe-worthy illustration of Munchausen syndrome by proxy. News-flash: many people are physically repelled by scents. If you think your body is so frail that it can't sustain the frontal assault of paint thinner or an octagenarian's toilet water you need help that evidence-based medicine can't deliver.
posted by docpops at 7:23 PM on April 3, 2007 [1 favorite]

Listener, I'm sorry that you found something I said insulting. There's definitely a disconnect here, because honestly, if I wanted to insult you, I would not couch those insults in the form of attempts to be helpful to you. I would instead insult you straight out and jessamyn would delete me, probably before you saw it, and everyone would go on thinking "that good old Ikkyu2, never insults anyone, always trying to be helpful."

In fact I was trying to be helpful. In a lot of places I was trying to get at the fact that doctors' perspectives and patients' perspectives differ greatly.

Very frequently I have patients in my clinic who feel their duty is to teach me about themselves and their story. That's what I'm expecting and hoping for when I meet a patient. That works.

Occasionally I have a patient who, with no medical background, enters my clinic and begins to instruct me about neurology and the practice of medicine. That patient's life experience somehow qualifies him or her to tell me that everything I know about neurology and medicine is wrong. Incidentally, I have several physicians as patients and none of them ever do this. None of them have ever, for instance, accused me of being an arrogant shit because I know more about neurology than they do.

It's not insulting to me. I don't care if unqualified people choose to spend their time lecturing me about topics I know more about than they do. That's their decision. But this kind of behavior reflects a profound misunderstanding of what to expect when you visit a doctor.

When you visit a doctor, you are consulting an expert for an expert opinion. That opinion is more informed than your own opinion. If you do not believe this to be the case, then you are erring in consulting the doctor in the first place.
posted by ikkyu2 at 7:25 PM on April 3, 2007 [2 favorites]

What I found judgmental, Ikkyu, were the comments about disability BENEFITS (which I never mentioned) and "threatening malpractice" (which I did not) and your overreaction to my not trusting doctors a priori. Other people were able to take into account I was posting freaked out, filter that out, and not react to it.

I don't tell the doctors my opinion. I tell them what I am going through that is the problem for me. I expect from them, as I do from the mechanic, some enlightenment about what we are doing. I don't just go with it. You are in a different country. Maybe medical service here is poorer. I don't know. But they don't ask enough questions and they don't have enough time. THis is the only time I've had a serious health problem. I expect the professional I go to for that opinion to fully attempt to assist me, not try to snow me because I'm inexperienced.

When I posted here initially I was fucking angry and dismayed, which is totally understandable state to be in, just not a good state to post in.
posted by Listener at 12:11 AM on April 4, 2007

Some of the more ignorant comments here (which may get nuked for all I know) remind me of the attitudes about cigarette smoke I encountered in previous decades. Your pain or physical response to noxious irritants is meaningless if someone else doesn't also have it and some shill doctor speaks loudly enough for the tobacco companies. Exactly the same thing.
posted by Listener at 1:23 AM on April 4, 2007

Listener, your first task is to find a GP you can work with. The best way I know to do that is to talk to people who live near you, ask them who they go to, and get some kind of consensus word-of-mouth recommendation.

Your second task is to find a way to communicate with that doctor that doesn't get their back up, and keeps them on your team.

Expressing yourself in phrases like "some shill doctor" is not a good way to prepare for this.

It doesn't benefit anybody for a doctor to insult their patient; therefore, a good doctor is unlikely to do that on purpose. If you find yourself feeling insulted by something a doctor has just said, you really do need to think about why, and seek a more sympathetic reading of their words. Do try to keep those hackles down.
posted by flabdablet at 2:05 AM on April 4, 2007

Listener-

I think part of the problem here is that you either do not understand, or do not want to take responsibility for, how your attitude comes off in this question and your responses. You introduced the words 'malpractice' and 'disability', and you have made it clear at every possible opportunity (and in no uncertain and very rude language) that you hold doctors in contempt. Perhaps the clearest example of this is that you've already diagnosed yourself, leading to an impossible situation for any doctor who does not simply agree with that diagnosis: they must either be incompetent or a bastard.

ikkyu2 has been measured in every response, but more than that, he has been right. Not only has he suggested things you might pursue in terms of physical diagnosis, he's been very clear about how and why doctors think about patients. Unfortunately, the thing he has been most correct about is that your attitude is unlikely to help you get help, and not because doctors are bad, but because you have already removed from their purview the things with which they might be able to help you.

And, while you may not have spoken about disability benefits, as someone who frequently fills out disability paperwork, my first thought on reading your question was that you seemed to be looking for something (what ikkyu2 has called secondary gain, in this case monetary). This isn't an insulting premise, those benefits exist for a reason, and I don't raise it here in order to berate you. If you're using buzzwords that are part of monetary settlements for medical problems (disability, malpractice) you are much less likely to get help from doctors, not because you don't need it or because they're bastards, but because use of those words suggests that you've already reached a set of conclusions about diagnosis and resolution that leaves very little room for the doctor to treat you effectively.

It is absolutely clear to me, and I tried to make it clear in my first comment, although with a bit more gentleness than in this one, that you will not get effective help from doctors until you change your approach to them. Again, I don't say that to be insulting, interactions with professionals and experts are learned behavior, and our approach to them can be changed. But, what you've shown throughout this thread is an overvaluing of your own opinion and a contempt and suspicion for the very role of doctors which makes it very unlikely that you'll find any joy with another doctor's visit. You need not decide to give up your critical acumen to make room for a doctor to do her job.
posted by OmieWise at 4:30 AM on April 4, 2007

Listener: I think you read ikkyu2 wrong about his comments about disability. He can be a dick, outside his speciality, but inside, he's a complete gem and a tremendous asset here on AskMe. (Nothing so wonderful as an inteligent, educated dick. Beats hell out of the stupid ones :-)

I seriously sympathize with your problem. I get hit by this sort of thing occasionally myself. As a child, I had to get very firm with my mother about using hairspray when I was near. Sometimes it's perfumes that get me. Fortunatly, never so frightening a response for me. The way I describe it: IF I can taste the smell (other than food, mostly), it's dangerous. (Microwave popcorn fumes make me ill too, unless it's really butter, which it usually isn't).
posted by Goofyy at 5:13 AM on April 4, 2007

one episode I had was identified by co-workers as a migraine. I don't like to think of medical stuff and I just like to play healthy (organics, exercise, no smoking or drinking) so I am really not aware of medical stuff in general. I had weird grey zigzags in front of one eye and I was falling over (that was the worse imbalance/dizziness episode.) However, I quit my job 2 weeks later and the symptom relief drugs and never had another "migraine." The neurologist wanted to "experiment" (his word) with some drugs for migraines. No thanks. I'm sensitive to drugs too. They fuck me up, so no experimental ones, I just take normal stuff, when really needed.

The weird zigzags is a very common migraine symptom, it's the one I get most commonly. The causes of migraines are a funny thing, something that you're fine with one day can set you off another day. for example, I like dark chocolate but in January I had an incident which started within about 5 minutes of me eating about 20g of chocolate. I get them more often if I'm stressed but sometimes if I've just come off being stressed and am winding down. Bascially they're pretty individual.

Medically, there's no easy solution, it's only at the moment they're coming up with reasons people have them and with decent solutions. It is possible to take pills daily to stop you getting them but this isn't ideal, especially if they're infrequent. Instead there are various medicines that might work but which don't in all cases. I suspect that is what your doctor meant by experiment. The new triptans apparently can stop some people's migraines dead if they're taken early enough in an attack, failing that they can make them a lot less severe. You just take a single small pill when you're having an attack. It's up to you obviously but it might be worth trying them to see whether they're less bad for you than an attack. I've only had one migraine since getting some so the jury is still out but I'll be giving them another go.
posted by biffa at 8:09 AM on April 4, 2007

Listener, I'm going to keep trying here.

The things I wrote about disability and secondary gain are true. What is more, they are widely believed by most doctors. The fact that they don't apply to you is pertinent here, I think, because when you bring up the term 'disability', meaning 'I have an illness that makes it hard for me to do things', health care professionals can (and sometimes do) hear, 'disability - I want my check, please fill out these 8 pages of paperwork.' And that's not what's going on with you. So when you use the word 'disability' you might confuse a doc about your motives. That's not your fault. It's probably the doctor's fault. But it's worth taking into account.

I don't think Canada necessarily has bad health care. Some of the great neurologists of the world, a few of my personal heroes among them, trained and practiced in Montreal. However, if I had an illness that was difficult - hard for doctors to recognize and know how to treat - well, I am not sure, given a choice, that I would necessarily choose to get on a plane and fly to Kamloops in order to take advantage of the medical community there. I've been to Kamloops, where I found the sunsets to be magnificent; but I sympathize with your troubles in finding a big-city kind of doctor there.

Finally, based on what you've said in this thread, I think I could probably fix your problem with the olfactory-triggered spells in 4 or 5 visits, using commonly accepted medicines with only mild side effects - if you were willing to trust me. Most any halfway decent neurologist could, I think. So it might be worth your time - I don't know what your commitments are - to travel to Toronto or Vancouver or Montreal to find a doc you could trust.
posted by ikkyu2 at 8:20 AM on April 4, 2007

Also, I suspect that some of the other posters in this thread don't really realize how deep a distrust of doctors can run. For obscure reasons - prior experiences, personality, coping style - people can be very skeptical about the abilities of docs to do anything other than cause harm, or "shill for drug companies," or whatever you can think of that is bad.

Berating people about this doesn't really help. They need to have a corrective experience with a good doc who's committed to helping them. So if I run into a person like that, in life, or especially in the clinic, I always try to do my best to be helpful.
posted by ikkyu2 at 8:23 AM on April 4, 2007

Thanks, Goofyy, but even nice guys can have bad days when they jump to conclusions, or a meanie can have days when they're nice. Point is, several people assumed what I say here is what I would say to a doc. Very bizarre.

I never mentioned disability to any doctor. I researched disabilities myself after some idiot at work said, "It's not as if you have a disability," and then I realized, hey, actually, I do. It's like like someone in a wheelchair who can't get into the public library with no ramp to accommodate. I need a bit better air. Canary in a coal mine.

And, biffa, thanks for your further reply. I wish the lame neurologist had explained, if this is indeed so, that other things than the one zigzag incident could be considered a migraine. Why take a drug for one incident, when the rest of the more disturbing incidents were apparently ignored? Now, I think I've had enough medical thinking for at least a year or so. This'll hold me until I get back to civilization.
posted by Listener at 3:51 PM on April 4, 2007

And thanks, Ikkyu, for your efforts and information. Clearly you are not like Collier in Kamloops.
posted by Listener at 5:42 PM on April 4, 2007

I just came across this and thought I would share it: I can breathe.
posted by infinityjinx at 8:22 PM on April 4, 2007

After thinking about this further, MCS sounds to me like the 'high' from sniffing inhalants recreationally, like gasoline, glue, nitrous oxide, nail polish remover, etc: disorientation, dizziness, temporary blindness, the like. I'm not accusing you, OP, of purposely inhaling tons of fumes, but based on the fact that they can cause the kinds of symptoms you described, and knowing that people have a huge range of sensitivities to different substances, MCS seems really possible and I don't understand why it's not a recognized diagnosis...?
posted by infinityjinx at 8:43 PM on April 4, 2007

infinityjinx, thanks for your link. I do have a mask I use sometimes. It's a cycling one that's got what was originally a military gas masking fibre of some sort in it. Good even for cigarette smoke. Gives me something to turn to in some situations, but can't be worn constantly.

I guess something has to be researched a certain way before it becomes an identifiable illness. For example, the allergist said it was an irritant response, not an allergic response, because of the biological mechanism that defines what allergic responses are. Okay. Just like engineering, the applied science of medicine has its own rules.

But what you say makes sense; there seems to be a double standard. If you do it recreationally, it's harmful; if the chemical company does it to you, you have mental issues. Uh-huh. Reminds me of the veterans and agent orange and PTSD. (I guess we're chatting now, which we're not supposed to do here, right?)
posted by Listener at 1:32 PM on April 5, 2007

If you do it recreationally, it's harmful; if the chemical company does it to you, you have mental issues.

That's a silly comparison. Intentional inhalation of solvents is done multiple times at concentrations of thousands of ppm and you're comparing it to inhalation of perfumes at at least a hundred times lower concentration. It's like saying that since drinking 50 L of water in a single sitting will kill you, 500 mL is harmful.

This is not to say that perfumes don't have ill effects on people, but an analogy to inhalants is not apt.
posted by grouse at 2:21 PM on April 5, 2007

grouse, I think it's very apt when people have different sensitivities. People have different vulnerabilities to things. That is a fact.

docpops, you said, "If you think your body is so frail that it can't sustain the frontal assault of paint thinner or an octagenarian's toilet water . . .."

Well, yes, I'm sure I could have withstood all that, for a time. However, I have seen people who put up with it and got much, much worse. Hell, even trichloroethane didn't kill the workers straight away. I'd rather not wait til it progresses to seizures or incapacating inflammation. I already exercise and eat right. Been feeling much better in the past years since removing myself from the exposures, thanks. It wasn't worth it to spend each weekend recovering from the week. Following the doctors' symptom suppression led to it getting significantly worse, higher order symptoms, from nose and throat effects to brain effects. What I wanted, since you ask, was not a diagnosis, but REASONABLE treatment from doctors. Sheesh. I have the evidence about my body, and it's the doctor's job to take it into account, not knee-jerk at the first thing he can think of.
posted by Listener at 9:53 PM on April 5, 2007

Listener, as I am also one who faces the choice of quickly leaving a room or enduring two hours of eye watering, sneezing, fuzzy-minded misery if people wearing certain perfumes have been in it within the last half hour, I sympathize with your sensitivity to fumes and stenches. But the more of your writing I read, the less helpful to your own cause I see your apparent attitude being.

Refusing a suggested drug treatment based solely on a belief that "drugs just fuck me up" is about as knee-jerk a reaction as I've ever seen, and the apparent belief that some drugs are "normal" and others are not is as unreasonable a position as I've ever seen, and you're complaining about doctors?

Sheesh indeed.

You do have the evidence about your own body, and it's your job to put two and two and two and two and two together and not get offended when a doctor tells you the answer is probably closer to six than to fifty-seven.

Here's a clue: drugs are all different, and unless you've had prior experience with a particular drug or class of drugs, you're unlikely to make good decisions by considering them all as purely poisonous.

If you're unsure about a new drug, find out as much as you can about that specific drug before making a decision about using it. Specifically, find out what the minimum therapeutic dose is, what the expected side effects are, and decide whether you can live with those side effects to gain the therapeutic benefit.

Also, unless the drug has been prescribed to deal with an immediately life-threatening condition, it's generally pretty safe to start at one tenth of the recommended dosage and work on up until you start experiencing either the expected therapeutic result or unacceptable side effects; tell the prescribing doctor if you intend to do this.

It's equally unwise to make drug-related decisions based on whether the drugs concerned are synthetic or plant-derived. I'm not claiming you've done that above, I'm just saying that I've seen that kind of misclassification going hand-in-hand with anger at doctors before, and encouraging you to re-examine it if "natural" is in fact a word that has connotations of approval for you.
posted by flabdablet at 4:17 AM on April 6, 2007 [1 favorite]

Flabdablet, you are making a general statement about drugs without knowing the context in which the drug experiment was offered.

In short, I was offered something experimentally to take care of a symptom that was NOT the issue. He just latched onto something he liked dealing with. He was not listening to me. He'd make a few good cans of dog food, though.
posted by Listener at 3:07 PM on June 5, 2007