I have a close friend who also has a neurological disorder - we also have in common a medical department and consultant neuro, or did till very recently, when departmental changes made said neuro head of neurology, and she saw someone else. She has had her dx for many years, and suffered from it for at least 30 years, bringing up kids with it, and holding down a significant job in public service. Recently she has had quite a lot of stress, losing several very close family members and friends to cancer and other things, as well as having to deal with what I can only describe as severely unkind group dynamics within her faith group. She is normally a feisty and fun person, and has over the course of her illness not only achieved a lot, but also been a major source of support and generosity to many many people. Over the last year her condition has worsened and she has spent a lot more time in a relapsed state than otherwise. Her disease has always been somewhat atypical but the treatments available have helped her through. She was recently hospitalised, and had an increasing sense of a certain type of hostility towards her though she was careful to vet herself for any feelings of paranoia:I have to admit she isn't the worlds greatest patient, and has a very obvious aversion to hospitals. By the time a hospital bed became available to her as a non-urgent patient (a week later than she really needed it) she was already remitting some, though it has been a long time since she has had a true remission. She returned home with a letter to her GP, which said no further follow up was needed, and using a term she did not understand describing her diagnosis, and not the name of the condition she has.

I looked this term up - it seems to be a modern euphemism for what in previous times was called hysteria, or illness of psychiatric origin. Her GP has discussed the letter with her, and is outraged by it. I have not offered her any insight into what this particular term means, neither has her doctor, though it is clear from other things that her dx is being called into question. She is understandably devastated by this, her 'label' has helped both her and her friends and family to come to terms with her illness, which has often led to her being close to death from inhalation pneumonia, very acute infections, and as it is an auto-immune condition she has often been on syringe drivers and intubation for long periods of time.

I would be interested to know whether anyone here has encountered a sort of institutionalised judgmentalism that seems as potent as racism, or misogyny, especially as with this particular diagnostic slot more than 2/3rds of people who acquire it are women, - one of the 'symptoms' is being knowlegeable about ones own condition, and the medical terms that describe it..........!!!!

I suppose that I am asking about this here for a few reasons:

1. That most of us here DO have this well-informed pro-active attitude to our equally difficult to diagnose neurological condition, and perhaps this medium, the internet, is actually challenging empirical medicine and its methods of discussing illness/disease.
2. That from what I have read here there are quite a few of us who have had doctors try to give a psychological explanation for our symptoms.
3. That neuros, specialists, doctors, etc. in being able to use such labels (and they are NOT psychologists or psychiatrists) and put them on record, sometimes, as in this case, with only a very passing acquaintance of the patients medical history, which can then colour the views of any other medical personnel. and influence any future treatments.
4. That people of a certain age may be viewed as being in some way not competent about their own lives, health, decision making, and may be put into this particular box AT ANY TIME, regardless of whether they are actually showing signs of the mental health issues that may accompany aging, or simply are stressed by events in their lives.
5. That there is not, in my country at least, an easy mechanism to get a different opinion.
6. That neurology seems to have an inordinate amount of male professionals, at least in my neck of the woods! (sorry, all you reasonable males out there)

Just to add to this, my friend IS showing signs of a deterioration in her health, and is quite frightened by it as she is only rarely experiencing any full remission - this is manifesting as high anxiety, with a sort of desperation, and her hospital experience just heightened it. She is on a rather heavy drugs regimen, including some pretty potent pain relief medication, that seem to have side effects such as a very unusual level of forgetfulness, and sometimes some confusion. These go away as medication is reduced and her condition improves.

As an adjunct to this whole situation one of the issues with her faith group was a group belief that illness and disease are not 'real', that in some way you make it for yourself, and she was marginalised in this group for not being able to make herself well again. This does not actually reflect what her faith teaches, and was a very full on and difficult experience.

I am sorry if this has been a bit long-winded, but it has raised so many issues for me, and to be honest I am struggling with my own feelings too, as I know how demoralising it is to go through the daily grind of living with a long term condition and all that it entails, only to have someone who barely knows you imply all that limitation and frustration, pain and genuine disability is some kind of self inflicted subconscious lie.

I would be grateful for any insights, I know not all health professionals are like this, and that there are plenty of good experiences, and good doctor patient relationships too.

Lindy

This is a way big issue, and I want to respond properly. Thank you for bringing it up - give me a day or two, but I do want to write something.

My first response is to validate the feeling that if a presentation is "atypical" it is most likely to receive a psychiatric diagnosis--I well remember the entire medical/nursing staff shunning the 3 or 4 mothers of autistic children who were on a pediatric unit onto which I rotated in the mid 60's. (this was a major regional "charity hosp." hence the reason for such a large # of autism patients--5 to 9 /yr was a large # back then--that's another post)We were all very aware that autism was due to very poor mothering....and schizophrenia was thought to be due to dysfunctional family dynamics (mostly the mother again).
If it is not known in the present world of medicne, it must be psychiatric in origin. Madelyn

I can relate very well to your friend's experiences. I have been diagnosed with Parkinson's Disease for 2 1/2 years. I was first referred to a neurologist in Jan. 99 after several doctor visits in 98, so I have had Parkinson's at least 10 years.

I believe I may have had Parkinson's since 1982. My neurologist today says that it is possible, but not probable. It is in 1982 that I stopped feeling young and healthy. One of my problems was stiffness, especially in the morning. I thought I had arthritis and went to a rheumatologist in 1983 who treated me like a hypochondriac and prescribed an antidespressent. Since there was no internet then, I went to the library and looked up the name of the drug I was prescibed in the Physician's Desk Reference. When I went back to the doctor, he chewed me out. He said I had no business reading the PDR since I didn't have a medical degree and therefore would be unable to understand what I read.

When I first went to a neurologist in 1999, MS was suspected, but the tests came back normal, so I was told there was nothing wrong with me. Friends and family encouraged me to try other doctors to get a diagnosis. Obviously, my Parkinson's presented itself atypically. A prominent movement disorder specialist told me there was nothing wrong with me and I must be depressed. A MS specialist told me anxiety was causing my symptoms.

After the visit with the MS specialist, I got a bill in the mail, even though I had paid my co-pay at the time of my visit. I called to find out why my insurance had not paid the balance. The insurance company told me the bill had been referred to their mental health division because of the doctor's diagnosis. I asked what that diagnosis was and they said they could not tell me because of privacy issues. I then told them that I had gone to this doctor with a diagnosis of possible MS, but the doctor said it was just anxiety causing my symptms. "Oh, we don't pay for that. You have to get your doctor to change the diagnosis so that your regular insurance will pay the bill." So, I called the doctor's office and they did change the diagnosis, although I don't know what it was changed to, but I didn't get anymore bills.

I just developed a tremor last week, so I am lucky that my Parkinson's has progressed slowly, but I don't know how I would have survived the last 10 years without the internet. I think that without being able to go on the internet and find out that others had undiagnosed neurological problems, I would have ended up with mental health problems in addition to Parkinson's. I wonder how many people have ended up in mental institutions in the past because they really had other medical problems that were not properly diagnosed.

Chicory

Thanks for your replies, just spent a while doing a better response than this, and lost it in the digital ether, so apologies. Madelyn and Chicory, yes, to all you say, and Fiona, I read your posts with great interest, and look forward to you take on this. I agree, it is big. It is there, and it presents people with obstacles they could do without - seems like medicines insecurities about its own validity are bounced right back to the patient!

Lindy

Lindy,

When I was going to my first neuro, he was a poor communicator and his note back to my PC doctor was not complete. I had told my neuro about the internal vibrating and increased fatigue and stiffness, and he discussed with me about some drug changes that could take place. There was no mention in the report of this discussion.

My PC doctor looked at me kind of funny and whispered in my ear, as though the walls could hear him, that perhaps I may have a mental problem instead that needs looking into. I freaked out when he said that, and I told him about the error in the report.

I was lucky because he let me choose another doctor. I ended up at the Lahey Clinic, and I have one of the top neurologists now. She is both a neurologist as well as a psychologist, and I'm treated a lot better than I was.

What gets me is the mental diagnosis is a quick and easy way to get way from finding the real problem. Rather than spending the time to dig into the problem, they would rather dash this off and hand out some pills to cover it up.

To me it sounds like your friend has MS, and by the time she was able to enter the hospital for tests, the lesions had closed.

The more I hear of stories like this, I want to puke!

John

Power is a funny thing. Fascinating to watch. Intoxicating to experience. Addictive if overly indulged.

At one time medicine was an art and was only too aware of its limitations. Over the last 100 years it has repositioned itself as a "science" and, lulled by the success of antibiotics, become convinced that it is all a matter of chemistry. The unconscious assumption is that combating illness is synonymous with promoting health.

Where once a healer learned humility as a basic tenet of her training (it was usually a woman) now a doctor learns arrogance (and is usually a man). This is particularly true in the specialties and less so at the level of the GP. Many of them are still healers. One of the best things we can do is to find a good GP. At times I am tempted to drop my neuro altogether.

As for the "faith" group (and society itself) the supposition is that the afflicted failed and the fact that we are social creatures is ignored. If they looked at it as a failure of the group itself (or the society) to provide the support the patient needed to maximize her health, then they would be in the uncomfortable position of having to do something themselves.

....Wher's my coffee?...

Well, this is a huge thing. Most diseases, but it seems PD especially sits right on that nexus of mind and body. Yes, it is very physical and people never seem to be able to understand what we are going through, even those nearest and dearest to us. That feeling that you are just barely surviving dose to dose is horrifying, and very difficult to comprehend.

But just thinking how my symptoms get worse if certain people are in the room, even if I'm not aware consciously that I have conflicted feelings about this person, is demonstrable of that subtle interplay between the factual world of chemistry and the mysterious inner world of the heart and spirit. Many people have heart attacks because of shocking news or great stress. It may have been a subjective emotional response that triggered it, but honey, it's still a heart attack. This is such a failing of modern science, to reduce things so much thinking that it's only either one thing or another - and if it's deemed only perceptual, to think that somehow it's unworthy of addressing or taking seriously, or that we could just change it if we really wanted to...

Labels - I know that some people feel really validated and taken care of by the fact of their definitive diagnosis. I feel some of that. But I felt it was a life sentence when I was diagnosed at age 34 or so, and my response was how dare you decide what my future is going to be. I truly believe that many of us are so sick because we expect to be - how could we not? The mind is such a curious thing...how about the fact that often when a toe is removed and transplanted for patients who have lost a thumb, that after some period of time it stops looking like a toe and more like a thumb? What the mind practices and rehearses is hugely significant. But yet, things like the placebo response are dismissed as 'just' the placebo response, where if some obscure chemical gets a 30% response in patients, everybody's all impressed.

So personally I resent the label of my diagnosis, and how it causes others to judge me and pigeonhole me, and I feel I have to shoulder all their fears and blame about me and themselves, as well as deal with all of mine! But then I do have very real physical symptoms - and I am appalled, for instance, that nobody takes responsibility for the side effects created by our medications even enough to give us helpful advice or to avoid interactions between all these substances we're advised to ingest.

SO it's a lot of stuff. And yes, institutionalized racism and sexism and ageism cannot help but affect everything hugely. Why do we in the US often ignore all the work that has been done in other countries - sometimes as if never had been done like with mucuna - until it's been repeated by US scientists. How is that even good science????? ????

But the whole mind-body thing - I really suffered when I first got diagnosed because my parents freaked out in response, and became Christian Scientists because they felt so abandoned and hopeless for me. Which then meant for ten years I could never even discuss my symptoms or treatment options with them. They finally quit, when feeling desparate and helpless during my first horrible dystonia attack, they called their practitioner to pray for me, and she refused, saying "well, she's still on medication." They were like, screw this - after all that money we've given them over the years and now in our most dyer moment they won't help? We're outta here.

There's more to say. Have to chill a little now, but knowing me, I undoubtedly will have some further remarks.

Best to all of you on this lovely Sunday....

...dire...whoops, it's the drugs.

http://www.healthbeatblog.org/2008/0...lence-sur.html

The Silence Surrounding Diagnostic Errors; Part I
This post was written by Maggie Mahar and Niko Karvounis

Despite all of the talk about medical errors and patient safety, almost no one likes to talk about diagnostic errors. Yet doctors misdiagnose patients more often than we would like to think. Sometimes they diagnose patients with illnesses they don’t have. Other times, the true condition is missed. All in all, diagnostic errors account for 17 percent of adverse events in hospitals according to the “Harvard Medical Practice Study,” a landmark study that looks at medical errors.

Traditionally, these errors have not received much attention from researchers or the public. This is understandable. Thinking about missed diagnosis and wrong diagnosis makes everyone—patients as well as doctors—queasy. Especially because there is no obvious solution. But this past weekend the American Medical Informatics Association (AMIA) made a brave effort to spotlight the problem, holding its first-ever “Diagnostic Error in Medicine” conference.

Hats off to Bob Wachter, Associate Chairman of the Department of Medicine at the University of California, San Francisco, and the keynote speaker at the conference. On Monday, Wachter shared some thoughts on diagnostic errors through his blog, “Wachter’s World.”

Wachter begins by pointing out that a misdiagnosis lacks the concentrated shock value that is needed to grab the public imagination. Diagnostic mistakes “often have complex causal pathways, take time to play out, and may not kill for hours [i.e., if a doctor misses myocardial infarction in a patient], days (missed meningitis) or even years (missed cancers).” In short, to understand diagnostic errors you need to pay attention for a longer period of time—not something that’s easy to do in today’s sound-bite driven culture.

Diagnostic errors just aren’t media friendly. When someone is prescribed the wrong medication and they die, the sequence of events is usually rapid enough that the story can be told soon after the tragedy occurs. But the consequences of a mistaken diagnosis are too diffuse to make a nice, punchy story. As Wachter puts it: “They don’t pack the same visceral wallop as wrong-site surgery.”

Finally, Wachter observes, it’s hard to measure diagnostic errors. It’s easy get an audience’s attention by telling them that “the average hospitalized patient experiences one medication error a day” or that “the average ICU patient has 1.7 errors per day in their care.”...


...Medicine is shot through with uncertainty; diseases do not always present neatly, in textbook fashion, and every human body is unique. These are just a few reasons why diagnosis is, perhaps, the most difficult part of medicine.

But misdiagnosis almost always can be traced to cognitive errors in how doctors think. When diagnosis is based on simple observation in specialties like radiology and pathology, which rely heavily on visual interpretation, error rates probably range from 2 percent to 5 percent, according to Drs. Eta S. Berner and Mark L. Grabe, writing in the May issue of the American Journal of Medicine.

By contrast, in clinical specialties that rely on “data gathering and synthesis” rather than observation, error rates tend run as high as 15 percent. After reviewing “an extensive and ever-growing literature” on misdiagnosis, Berner and Grabe conclude that “diagnostic errors exist at nontrivial and sometimes alarming rates. These studies span every specialty and virtually every dimension of both inpatient and outpatient care.”...