FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
|
01-09-2013, 03:53 PM | #1 | |||
|
||||
Member
|
Quote:
At least from my experience, people who have emotional problems-know it. Over 20 years as a practicing physician, I have seen numerous patients. I don't remember more than a handful of patients in which I felt they had some emotional issues, which they refused to acknowledge/were not aware of. I do remember quite a few whose first sentence was-"It doesn't matter, you are not going to believe it any how". They all had experiences of being disbelieved by physicians, or it being implied (or more than implied) that they suffer from some psychological problem. I did have many patients who knew they were anxious or depressed. Even today I saw a young woman who admitted she mostly needs reassurance because her mother was recently diagnosed with breast cancer. And it was very easy to give her this reassurance. Depression can cause pain, fatigue and many other physical symptoms, but again I have seen very few patients with depression who refused to admit it or receive treatment for it. I don't think my "mix" of patients is that much different from the average patients other physicians see. So, where are those 50% with "unexplained" diseases and ill-defined emotional problems. Why don't they come to my clinic? How do they "transform" to patients with an unusual response to a commonly used treatment? Less common presentation of a serious illness? Or even sometimes, admittedly, patients with symptoms I can not explain despite all my efforts. Why do my patients clearly say they are anxious, or depressed or concerned. Why do they feel comfortable telling me so? Where are all those patients who are offended by being told that they have emotional problems? Why do I see it as completely normal for a patient with a serious illness to feel scared, concerned, sad and a myriad of other emotional responses? The irony is that I found myself as a patient who belongs to this group of non-existing patients (in my opinion). The irony was that I had an illness which would have intrigued me as a physician and would have sent me searching for hours to find clues, but did not do so for my treating physicians. The irony was that I could not protect myself from that approach, like I have done with my own patients. I recently came across an e-mail I sent to a physician I consulted a few years ago (a leader in her field) I asked her what was the explanation for my near collapse during a very simple test. She never bothered to answer, as the results of those tests were normal. She only suggested that the "pain" from the test could have made me very anxious. I later found that my response was the "marry walker phenomenon" which was a huge clue to the diagnosis of my illness. But, she never bothered to do an internet search to try and understand such an unusual and unexpected reaction. So, you can easily see how "psychosomatic" explanations are created and how you can get those 50% of the patients. My explanation for those diagnoses is a combination of ignorance and arrogance. Lack of curiosity and search for the truth. And if my approach leads to missing a few patients who have "unexplained" symptoms which could successfully be treated with CBT and depriving them from that treatment-be it. |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-10-2013) |
01-10-2013, 05:16 PM | #2 | ||
|
|||
Member
|
Quote:
I did send an email to an MG specialist over here asking whether medical professionals could actually determine that specific MG symptoms were driven by psychosomatic processes alone, and if so, how they could be certain of those findings.......In a nutshell, they didn´t know enough about this yet and it was a challenge in general. I was actually grateful to receive an answer Alice...... (Somehow, I can imagine you working like a medical detective on a set of perplexing symptoms like clues to solving the most´unsolvable´mysterious cases that somehow some may have overlooked because they seemed´irrelevant´- or that it was simply time for them to go home for the day!) But by the same token, I can´t quite believe that too many CBT patients would have been worse for wear....... Because I think somehow, with your approach, you would have intercepted those as well! |
||
Reply With Quote |
"Thanks for this!" says: | alice md (01-11-2013) |
01-17-2013, 03:13 AM | #3 | |||
|
||||
Junior Member
|
Looking thru discharge instructions today from an E.R. visit a few days ago (post-MG diagnosis), I noticed they had helpfully included a sheet on "Globus Hystericus: a common problem found most often in young women. It is a feeling as though something is caught in your throat. Anxiety, depression & stress are all thought to play roles in this feeling. Usually there is nothing physically wrong.... Sometimes anti-anxiety medications may be prescribed."
That was my 4th experience with doctors diagnosing me as a hypochondriac or anxiety-ridden. Given I'd had the MG diagnosis shortly before this last ER visit, I would have assumed the doctor would attempt to identify whether the sensation of throat closing & palpable popping might be connected to the MG. No go. Apparently, I'm still viewed as (an) overly anxious (female). My recourse, I've contacted the hospitals to report the misdiagnoses (despite laundry list of symptoms being presented) and asked that they train staff on myasthenia gravis to recognize symptoms. I don't want to show up in their E.R. in crisis and be killed by staff ignorant of how to treat it. My noisiness may not do any good but it makes me feel more empowered & less helpless. I cannot comprehend how a person can stay strong through so many years of being misdiagnosed as having an anxious personality. I've only had to put up with it for 2 months & it feels unbearable. You people are STRONG!!! |
|||
Reply With Quote |
01-17-2013, 03:34 AM | #4 | |||
|
||||
Junior Member
|
I should mention I live in Austin, TX where we have a sturdy MG support group with 12-22 attendees per month. With that population, it shouldn't be out of the question for E.R. doctors to get some base training on the rudiments of MG.
|
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-18-2013) |
01-17-2013, 05:04 AM | #5 | ||
|
|||
Grand Magnate
|
Seishin, Well, that's the irony of Globus Hystericus, isn't it? If we weren't calm, logical and reasoned, we wouldn't survive that kind of BS doctoring. It's meant to get them off the hook when a diagnosis is finally made, as if it was so damn difficult to see through "all" of that emotion in order to make it.
If you have another crisis, just talk like an emotionless robot. That shouldn't be too hard if you can't talk, breathe or move. Annie |
||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-18-2013) |
01-17-2013, 11:32 AM | #6 | |||
|
||||
Member
|
When I went to the hospital this past spring for breathing problems, at the top of the diagnosis paper it said that I was anxious. I was relaxed the whole time and never over-reacted. My blood pressure was high, but it wasn't because I was anxious, it happens when I'm swollen. My face may have been droopy and maybe the weakened muscles made my face look different. I think a lot of people misinterpret a mood by looking at someone's face and with MG the face can give a message different than how we actually feel inside. My smile sometimes looks like a scowl.
|
|||
Reply With Quote |
"Thanks for this!" says: |
01-17-2013, 05:35 PM | #7 | |||
|
||||
Member
|
People think that I am mad or depressed when I am not.
__________________
Celeste |
|||
Reply With Quote |
01-22-2013, 02:14 PM | #8 | ||
|
|||
Member
|
Quote:
Perhaps starting off something like this: 1. Ask patient questions 2. Ask which of the patient´s muscles are the weakest 3. Elicit myasthenic weakness by observing repetitive movements of muscles where possible. Apply resistance. 4. Refer patient for necessary blood tests, CT scan and SFEMG 5. Refrain from making random, out-of-context assumptions - such as the following: • Patient must be lazy if they complain of muscle weakness with repetitive activity • Patient must be overanxious if they complain of respiratory distress • Patient must be anorexic or be worried about weight gain if they have problems chewing their food • Patient must have been drinking before if speech suddenly becomes slurred and unintelligible during appointment • Patient has difficulties climbing stairs or getting up off the floor because he lacks will power • Patient can safely increase overall fitness level at gym – (and then, unexplained swallowing weakness, epiglottis reaction times and droopy eyes might even disappear - along with the patient. That is, if ignored long enough by doctor) • Patient must be depressed if unable to participate in evening social activities involving taking dog for a walk, sitting through a film or eating out with family and best friends. • Patient can not possibly be experiencing fatigable muscle weakness during the SFEMG test if that test is negative • Patient must have imagined muscle weakness if all tests are negative • Patient´s hypoxia symptoms onboard an aircraft are caused by a fear of flying • Patient has inadvertently contracted a new psychosomatic illness when weakness spreads to a different muscle set • Patient needs immediate referral to psychiatric ward if he/she complains that by using one muscle set, weakness appears in another totally unrelated set of muscles • Patient´s gradually weakening facial muscles at appointment are a sign of reluctance to show appreciation of extensive knowledge, skill and advice of doctor Then perhaps in the future some of those diagnoses taking eight years may be reduced to only four!!!! Anacrusis |
||
Reply With Quote |
"Thanks for this!" says: | alice md (01-23-2013), Quandry (01-22-2013), seishin (01-22-2013), southblues (01-22-2013), wild_cat (01-22-2013) |
01-23-2013, 04:08 AM | #9 | |||
|
||||
Junior Member
|
Btw, I meant to explain that when I said I didn't think a psychosomatic diagnoses was due do to having a male physician, what I meant was this:
Such a perception might arise from not the gender of the physician themselves, but from the masculinized ways of looking, perceiving and thinking that come about as a product of the 'medical gaze' (see Foucault, Michel (1963) 'The Birth of the Clinic: An Archeology of Medical Perception'. Oxon, UK: Routledge). That of course, would be specific to both genders. |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-23-2013), southblues (01-23-2013) |
01-27-2013, 02:07 PM | #10 | ||
|
|||
Member
|
I don´t particularly hope I have this after all these years!
But it was certainly an interesting link with a lot of information: http://jnnp.bmj.com/content/76/3/307.full HOW CERTAIN CAN WE BE THAT A SYMPTOM IS FUNCTIONAL? ´Several recent studies have shown that patients whose symptoms are considered neurologically unexplained after appropriate assessment rarely turn out to be diagnosed with a somatic neurological disorder later. However, it should be born in mind that these studies were carried out at specialist centres, and that the risk of a misdiagnosis of disorders characterised by functional symptoms may be higher in less well investigated patients. Stone et al found that a neurological explanation had been found in one of 42 patients with functional weakness or sensory loss after a mean of 12.5 years of follow up.52 Crimlisk et al found that only three of 64 patients with functional weakness had developed an identifiable somatic disorder explaining the weakness 6 years after the initial assessment (two out of these three patients were misdiagnosed because they had disorders with variable symptoms).5,53 Couprie et al found an unexpected somatic explanation in four of 56 patients with a functional neurological problem after 1.5–9.5 years.54´........ ´That does not mean that neurologists should rush into calling a symptom functional. There are also risks of overdiagnosing functional problems.63,64 In particular, patients with atypical or rare organic disease presentations may not receive appropriate treatment or be denied financial help for incapacity from the government.65 Once a clinician has diagnosed a problem as functional, patients are less likely to be taken seriously by colleagues or to receive palliative or curative treatment.66´............ |
||
Reply With Quote |
"Thanks for this!" says: | wild_cat (01-28-2013) |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
My Wife & I - Similar Symptoms Within Weeks | New Member Introductions | |||
Anyone have similar symptoms? | Parkinson's Disease | |||
Symptoms similar to human form of mad cow disease | General Health Conditions & Rare Disorders | |||
Psychosomatic symptoms | Reflex Sympathetic Dystrophy (RSD and CRPS) |