You would think that neurologists know that. It is written in all their text-books.

My normal expression looks like a scowl. The droopy eyes (both now) make me look like I a squinting, like I am really annoyed or glaring at someone. I hate this part of MG! Even on a good day, I look like I am miserable and people treat me as such

kathie

From my experience, the MG diagnosis checklist of the future would have some very basic guidelines already even at the doctor´s office.

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

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.

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´............

A small city had 10 roads. 5 had a name and 5 did not.

Whenever someone went on a road with a name he could easily say the name of the road, but whenever someone went on one of the roads without a name, he could not say where he was.

This was a very inconvenient situation, so it was decided that all the roads without a name will be from now on called unnamed roads.

So, now it was much easier. when people asked each other were they were, they would answer-I was in an unnamed road.

It very rarely happened that people would miss the name of the road and mistakenly say that they were in an unnamed road.

saying you were in an unnamed road gave very little information as to where you really were. As opposed to named roads which meant a specific road. an unnamed road could be almost anywhere.

Still, it made everyone feel better that they could say they were somewhere.

They were no longer concerned in putting those roads on the map, giving directions or trying to give them a specific name.

Until one day one of the people said it's not nice to say unnamed road, let's call it happy roads instead. Everyone thought this was an excellent idea. So, from now on when they went on a road without a specific name they would say they were in a happy road. And all the people living in the city were very happy.

I personally think that it would be much better if people would say that they don't know where they were. No doubt that it would be less convenient initially, but possibly it would eventually lead to making better maps and giving all the roads a name. But, who am I to say.

I came across this thread by accident - I have a different neurological condition so usually post in the CRPS forum (RSD to many of those in the USA).

I am so totally and utterly struck by the experiences I've just read about here. They absolutely, exactly mirror my experience of neurologists (and a particularly stupid neuro-psychologist) and the diagnostic process I have gone through.

I cannot get my logical, professional head round the illogical and ludicrous idea that in the total absence of any evidence base, it is OK to diagnose people with conversion/somatoform/non-organic/functional/psychosomatic/hysterical conditions. In a world where we are only supposed to make medical decisions based on a medical evidence base, I cannot get anyone to explain to me why it is acceptable that they label 30-50 percent of patients presenting with neurological symptoms as having psychiatric issues. There is just no evidence base to support any psychiatric or psychological basis for their symptoms.

I have done I don't know how much reading about functional/conversion etc disorders and there is no satisfactory, causal, reasoning path that takes you from symptoms to such a diagnostic outcome. The definitions are circular and nobody has managed to actually define 'functional' in any clinical paper using words that actually mean anything. There are plenty of words but they are completely unable to actually define what a functional disorder actually is. I appreciate that there are genuine conversion etc disorder patients and I do exclude such people from my statements here.

It would serve neurologists and their patients better if they admitted their substantial ignorance of the way in which the brain and nervous system works. Their arrogance knows no bounds in spite of their ignorance. To suggest that CBT is 'the answer' is also without much foundation - it is patently obvious and indeed well known and (perversely) widely agreed that such psychological therapies are largely ineffective for patients diagnosed with functional disorders. Why might that be...?!! Perhaps they don't have underlying psychological problems at all! It's too easy to make the psychological cause argument because it sounds superficially plausible. However, when you actually test it, there is no evidence that justifies making the causal link from psychological isses to the sorts of disabling, involuntary, neurological symptom presentations that people have.

Its not so long ago that neurologists thought MS was mere hysteria. Then came MRI and suddenly an organic cause was apparent. I'm sure that as new testing methods are developed, many of these people labelled as hysterics and attention seekers will be found to have absolutely genuine, organic causes for their symptoms.

Sorry for ranting a bit and not being as coherent as I'd like - this whole area gets right on my nerves!!

I had forgotten about the neuro-psychologist. One thing I am sure of; she was way more crazy than I am.

Ha ha! The one I saw was just dim. He wasn't set up to deal with an intelligent person who wasn't prepared to sit there like a doe-eyed twerp and listen to his nonsense without challenging him. He couldn't even get the name of the condition I was diagnosed with correct.

He was particularly upset when I told him that I was perfectly aware from his questions that he was trying to establish whether or not I was suffering from conversion disorder. I point blank told him to tell me there and then if he though i had conversion disorder and crack on with the treatment because from all my research that was significantly more treatable than the (very organically caused) neurological condition I had already been diagnosed with!! I wasnt joking either, if that was what he thought was wrong, I would have at least tried his 'treatment'. Interestingly, he immediately shut up shop, stopped asking any more questions and asked if there was anything else that I thought he could do for me. I said no, not really and he got rid of me!!!

He was a slime-ball, I didn't trust his motives and he wanted to talk far too much. It was great when he discharged me. The condition I have often presents with movement disorder problems - dystonia, myoclonus, spasms, tremor etc. mine is severe but is consistent with the overall symptom pattern I have. I am in the 5% of patients with what they call "cold" CRPS which is typified by severe movement disorder and extremely low rates of remission. The problem is that in the whole of the UK there are actually no true specialists in this condition and the couple of consultants who are the best we have will very, very rarely see a presentation like mine so they have no clue. Neurologists will almost never see it - the ones I saw had never treated or seen any cases of CRPS so they were hopeless.

In my job I couldn't get away with just shrugging my shoulders and saying sorry, never come across that before. Or worse, making it up as I went along hoping to fool patients who were too stupid or too deferential to challenge me. I would be expected to go and do the research to give people answers. Why is it that these extremely well paid 'professionals' don't need to bother to rectify their own ignorance in order to provide effective and informed treatment? Why should I be disadvantaged just because I have a very rare presentation of a rare condition? Don't I deserve the same level of care as someone with a common condition? It's professional laziness and an astonishing lack of interest in gathering new knowledge.

Sorry , I'm away again! Now you've got me started on this, I'm venting my spleen!!!

Hi Neurochic!

Vent all you like - it is really very kind of you to come over here and share your examples and your story (which I´m sorry has been such a frustrating one for you) Much appreciated. Yes you should NOT be disadvantaged and that is why I would hope to not ever have the diagnosis of a conversion disorder, because if we think we have enough bad examples of MG treatment and lack of knowledge it would be even worse where I live being treated with conversion disorder. They would have absolutely no idea whatsoever how to handle it!

Thanks so much for visiting & sharing

Anacrusis