NeuroTalk Support Groups - Are psychosomatic symptoms similar to MG?

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I did read somewhere that it could take up to as long as 8 years to diagnose a female with atypical MG as compared to only 2 for a male. If this is true and given that MG is already more prevalent with the female population to start with, then why would that be?

That is unbelieveable and should not be!!!
Mike

A well-known MG expert said in a conference I attended on MG in 2004 (yes, an MGFA conference) that it takes an average of one year for a man to be diagnosed with MG but an average of seven years for a woman to be. I don't know what was more disturbing; the fact that it takes that long or the fact that he seemed to be accepting of it.

If our world does not stop treating women like second class citizens, we women may bring hysteria to a whole new level. This has to stop.

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Originally Posted by southblues (Post 944725)

Can conversion disorder have a radical response to treatment due to placebo effect?

I am intrigued by this!

If those with a psychosomatic MG-like disorder get better with treatments that they don´t really need (take Mestinon for example)
Then how do they manage to counteract the physiological overdose side effects of a drug they never needed in the first place?!

If the disorder also produces positive neurophysiological tests then yes, how can you tell which is which?

In general is it really possible to inhabit the profile of a disease, it´s symptoms and progression so precisely without prior knowledge of its mechanisms and not actually have the disease?

I wonder if those with somatization/functional type disorders resembling MG are actually being treated correctly for them -
Or is that asking too much when we already know that those with just physical MG symptoms can have a hard enough time
finding a good neuro these days!!!!!

Wishing everyone a wonderful day :)

Anacrusis

Quote:

Originally Posted by Anacrusis (Post 945037)

I am intrigued by this!

If those with a psychosomatic MG-like disorder get better with treatments that they don´t really need (take Mestinon for example)
Then how do they manage to counteract the physiological overdose side effects of a drug they never needed in the first place?!

This is very difficult question! I can only guess we will probably never know the answer to this. I can't imagine any way in which the physiological v. the placebo effect of any drug can be adequately qualified. How do I know for sure when I am having a placebo effect? How can anyone know unless they get inside my body and do some kind of imaginary physiological testing that proves one way or anther what it is or is not?

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If the disorder also produces positive neurophysiological tests then yes, how can you tell which is which?

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As I understand (and I may be wrong because I'm not qualified in these things), the main positive neurophysiological sign for weakness of a psychosomatic nature is something called Hoover's sign. This is when the physician asks the patient to lift a leg, which may appear weak. However, when the physician then asks the patient to lift the opposite leg he cups the heel of the other foot to see if pressure is exerted downwards, thereby revealing the weakness as inconsistent.

Whether or not this feature may appear in MG or other diseases I do not know.

But I do not this is one of the main diagnostic signs for psychosomatic,as opposed to other forms of weakness.

This is one of the things I find puzzling about my diagnosis. I have never been able to lift my leg when asked. On first attempt my leg does not rise from the bed, I immediately begin to grip the bed/walls with my arms and body to try to exert pressure from other parts to try and lift the leg. I am guessing I wouldn't be doing that if I were able to lift the leg by merely exerting pressure downwards with the opposite heel. In fact, I don't recall a physician ever cupping my opposite heel in that way.

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In general is it really possible to inhabit the profile of a disease, it´s symptoms and progression so precisely without prior knowledge of its mechanisms and not actually have the disease?

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I think this is also a complex question, because it is a lot to do with how we perceive our symptoms. Let me give you an example. I thought for a long time I had some kind of postural hypotension. I can't stand up very long and doing so causes me to faint. Equally, I have to keep my feet raised at all times otherwise I get palpitations. But then I began to wonder whether the same set of symptoms, from a different angle, could be explained by muscle weakness. Standing up the muscles get gradually weaker and give way. Sitting with you feet not raised takes more muscle action than sitting with them raised. Does this get me any further to classifying what it is? No. But it makes me realize that how I think about my disease has an impact on how I understand the underlying process.

[/QUOTE]

I wonder if those with somatization/functional type disorders resembling MG are actually being treated correctly for them -
Or is that asking too much when we already know that those with just physical MG symptoms can have a hard enough time
finding a good neuro these days!!!!!

[/QUOTE]

From what I read I see a lot of people given functional treatment simply don't respond or see an improvement. I think it's about 50/50. I dare say there are many patients who are suffering from a repressed psychological problem that manifests itself physically and that can be managed through CBT, graded exercise and therapy.

My question is, as somebody who has already completed courses in CBT, and who maintains a good lifestyle through diet and exercise, and who has ALWAYS been very open in talking about thoughts and experiences to the extent that nothing is left buried, who has a strong network of friends and family who are supportive without being overbearing or threatening their sense of independence -- when the patient is doing all this, and is STILL getting progressively weaker, I wonder what they will offer?!? I'm looking forward to finding out on the 15th. :)

[/QUOTE]Wishing everyone a wonderful day :)[/QUOTE]
And you too Anacrusis. Thanking you for your inquiring mind and thought-provoking questions in helping me to understand this disease.

Wild_cat :hug:

Yes, 7 years to diagnose

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Originally Posted by AnnieB3 (Post 944956)

It is certainly not comforting to know that I am within the norm for the length of time it took to reach a diagnosis of MG. Yes, 7+ years! Unbelievable! I think I'm paying for it now in terms of my response to treatment, which has been far from stellar. I really don't think that my course would have taken the same turns if I was a male patient. Sad, but true!:(

Cate

Quote:

Originally Posted by wild_cat (Post 944387)

Warning: This might turn into a bit of a rant :)

The main reason I have been given a 'psychosomatic' diagnosis and not MG is because I have fluctuating muscle weakness. My muscle weakness is 'exacerbated by heat & repetitive muscle use and improves with rest and cooling'. I have been firmly reassured that this kind of muscle behavior are all a part of my 'functional' symptoms.

My second neurologist directed me to a website about functional symptoms. The symptoms listed appear to include every system in the body, every symptom you could imagine, in any possible combination. So, with this in mind, it's plausible any illness could be labeled as psychosomatic, given the 'right' circumstances.

What I debate is how useful having a diagnosis such as 'functional' is helpful, given that so many patients with such different symptoms are all lumped into the same category. Given that – as Annie has pointed out – their diagnostic criteria for functional symptoms are so 'unscientific', it's hard, as far as I can see, to legitimize it in terms of objective testing.

The way I see it, ALL illnesses have a psychological AND physical impact. The idea of separating out the physical from the psychological and putting a diagnostic 'cause' in one or the other category is quite frankly, archaic.

To me, the terms 'functional', 'psychosomatic' or 'somatization' are simply terms used when the physician is unwilling (note, not unable) to think outside the box. As I read in an article recently, a 'functional' diagnosis is a problem with the patient/physician relationship, not with the patient.

In the 1950s patients with epilepsy and MS were relegated to mental institutions and given treatments such as electric shock therapy to 'cure' them for their 'psychosomatic' symptoms. This is before epilepsy and MS were well understood.

Just because a physician cannot find an immediately obvious diagnosis does not mean the patient is suffering from 'emotional' problems.

When you look at the statics of misdiagnosis rates for patients labeled with 'functional' symptoms, it comes in at about 5%. This may not seem much expressed as a percentage, but when you consider that that is 5 in every 100 people that's actually quite a lot.

An article written (amongst others) by the 'MG specialist' I have just seen, assessed 1144 neurology outpatients at a three year follow up. Among their findings was a major degree of clinician error in symptoms suggestive of MS at follow up, leading to confirmed diagnoses, as well as a host of other neurological organic diseases latterly diagnosed. Those that were classed as having their symptoms 'not at all explained by organic disease' amounted to 68% in young females, highlighting that unexplained symptoms are most predominant in this category. Out of the 1144, 5 had died by the time of follow up, those predominantly with 'non-epileptic' seizure.

I think that the reason I have been given a 'psychosomatic' label may have quite a bit to do with being young and female. I'm not sure how much it has to do with the 'male' physician (my first GP was female). I think it's a very difficult diagnosis to get away from once you have it.

The first neurologist I ever saw – before he had examined me or did any tests – told me I had 'a classic case of hysteria'. My parents thought I had had a stroke. I couldn't walk and could barely speak. Three years on I believe this diagnosis has stuck because following up physicians do not want to refute the original diagnosis. Therefore they simply don't engage with the patient or listen to what they have to say.

Sorry I didn't read the entire text you wrote, but I read most of it and disagree to a large extent. Mind that this is coming from someone who was told for about 5 years that my illnesses were psychosymatic and then undiagnosed for a couple years before being misdiagnosed for 5 years. I think psychosymatic illnesses are real and can look like almost any disease. There are studies to this effect (one case study on hysterical blindness springs to mind).

The problem is that its too easy for a doctor to look at a real illness they don't understand and call it psychosymatic. I completely understand where you are coming from and agree that doctors need to rule out everything before calling something psychological, but just because we got a raw deal doesn't mean others out there don't need some kind of psychological help which will alleviate their symptoms.

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I think psychosymatic illnesses are real and can look like almost any disease.

What is this based on? Or in other words if they look like another disease, how do you know it is not that disease?

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...others out there don't need some kind of psychological help which will alleviate their symptoms.

Who are those others and why do you think they are different from you?
what kind of psychological help and how does it alleviate their symptoms?
How do you differentiate between a patient with a "real" illness (even cancer) who does better with emotional support and a patient with a "non-real" illness who does better with emotional support?

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I completely understand where you are coming from and agree that doctors need to rule out everything before calling something psychological

How exactly do you rule out everything?

Quote:

Originally Posted by AnnieB3 (Post 944607)

The only thing doctors should be focused on while evaluating patients is the truth.
Annie

Quote:

Originally Posted by wild_cat (Post 945264)

I think this is also a complex question, because it is a lot to do with how we perceive our symptoms.

Thank you for all this inspiration! It is also interesting that looking for these truths can change and become fragmented
depending not only on personality but also which type of doctor you visit.

Take my pick......!

When at the physiotherapists my answer was said to lie with a neurologist
When at the neurologists I was told to find my way to a gym!
When visiting the doctor the diagnosis was supposedly to be found at the psychologists
When at the homeopaths, my answer must surely lie with the mineral supplements offered compatible with my symptoms
When at the alternative doctors the only path for me appeared to be the one using energy healing
When I, as a ´diagnostically confusing patient´

Quote:

Originally Posted by alice md (Post 944680)

Provide(..) a release of negative emotions or even punitive actions under the guise of a respectful medical label… Kutz, I., Garb, R., and Kuritzky, A., Diagnosis of misdiagnosis: on some of the origins and functions of psychophysical misdiagnosis, Gen Hosp Psychiatry 5 (3), 197, (1983)

.....then my search for truth might very well lead me to a forum like this!

But when I traveled to a different country where new truths providing better alignment could be accessed via different medicinal cultural perspectives an MG researcher & neurologist told me the answer was atypical seronegative myasthenia going into remission....I had come full circle back to my own original suspicion all those years ago.....

In the end it really is we who know, - or at least I should say we know when something isn´t quite right
about another´s perception of how we are experiencing our own symptoms and what they might mean.

wild_cat,..…thank you for your reply, you inspire me to remain truly inspired - no matter what :)

Anacrusis

PS
BackwardPawn, I don´t think anyone means folk shouldn´t get psychological help when they need it, not at all. I think that it´s just the diagnostic phase like you, that we are a little frustrated with.

Quote:

Originally Posted by Anacrusis (Post 945589)

Thank you for all this inspiration! It is also interesting that looking for these truths can change and become fragmented
depending not only on personality but also which type of doctor you visit.

But when I traveled to a different country where new truths providing better alignment could be accessed via different medicinal cultural perspectives an MG researcher & neurologist told me the answer was atypical seronegative myasthenia going into remission....I had come full circle back to my own original suspicion all those years ago.....

I wonder what kind of personality combination (patient and physician) creates a situation more conducive to a psychosomatic diagnosis?

I have often questioned whether there is something in the way I come across that leads physicians to think this, rather than something else. I'd be really interested to know, if that is the case, what it is.

I agree with you that there may be a certain cultural bias towards dishing out a psychosomatic diagnosis. Certainly when I was in Iceland no doctor for a second suggested my symptoms were psychosomatic. It's just unfortunate it would have cost me the price of a house to receive assessment and treatment there.