Are psychosomatic symptoms similar to MG?
 

Here are some questions:

• Do psychosomatic illnesses include specific sets of fluctuating muscle weakness that is exacerbated by heat & repetitive muscle use, improves with rest, cooling and MG medications?!!!!

• Are psychosomatic and MG symptoms really that similar? Or is it more just a case that an assuming doctor simply cannot tell the difference and doesn´t actually know much about either in the first place?

• Are some male doctors perhaps predisposed to giving a psychosomatic diagnosis to females with muscle weakness without conducting any fatigable muscle weakness tests prior to diagnosis? So in other words: Would, for example.....an egocentric doctor + uncertain female + any type of muscle weakness just happen to = a rather unfortunate combination?

• Are there any of you who are males on this forum and have also been previously´psychosomatisized´on account of fatigable muscle weakness???

Oddly enough, what I see in hindsight is that during the 5 years of fluctuating diagnoses and fluctuating progressive muscle weakness the only single constant during that entire period was in fact, my own persistent and unwavering emotional stability................


Have a fine day :)

Anacrusis

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.

Warning - rant back!!!
 

You have put a lot of thought into the topic and done a lot of research – perhaps a new piece for a publication somewhere down the line… Thanks for sharing all your interesting view points as well, wild_cat.

I know exactly what you mean about it being difficult to shake off an unsubstantiated psychosomatic diagnosis later down the line that has been assigned´willy-nilly´by a doctor who previously didn´t do his/her job properly and yet retains such lasting powers of influence over future assessments with new doctors.

The last thing I asked my then doc was to give me the test to prove to both of us that my weakness was actually of psychosomatic origin and where was that test and why hadn´t I taken it! It´s a bit of a mix of mind and matter in every disease granted. But the problem lies in the fact that assigning a disease purely to ones own´imagination´is a denial of resources available, treatment and in worst case scenario with MG, your life.

In my case part of me started to believe that yes, maybe the doc was right I had had a child, I was a little older, had a very demanding job, yes it must just all be getting too much for me! Things were developing so gradually until the worst peak where I was close to needing a wheelchair. I learned an awful lot about human nature during my 2 years there whilst the doctor learned very little or nothing about myasthenic symptoms.

But another part of me was gradually realizing that these were not symptoms for the psychiatric ward.........

There were things like what a happy and balanced person I was. If I had given up on activities and on life in general I would have understood, but instead my brain took over and if I could not finish speaking a sentence, finish a round of applause, peeling an apple, sharpening a pencil etc, at least I had every good and ambitious intention of starting it and I figured out the most ingenious adaptive ways to get things done.

Being close to drowning with gentle swimming when muscles suddenly quit...Why using the upper body and pushing myself to exercise was complete myasthenic torture where it could not even do what my 80 year old mother-in-law´s could!! Yet the lower body that was not so affected with myasthenic weakness felt like it belonged to a 25 year old.

I did get ALL the tests in the end (all after I started to gradually get better and had a little energy to fight for them)

I have had 3 regular doctors, the most recent was a good one but I am changing again because I was fortunate enough to meet another doctor who shows´interest´in a negative SFEMG and that makes a big difference.

In the space of 5 years I have very briefly met only TWO medical professionals related to MG who have really caught my attention with their approach in a big way and of course the people on this forum - unfortunately both of the profs were neurophysiologists.

Should it really be that difficult for a doctor to look at this:

´Specific sets of fluctuating muscle weakness that are exacerbated by heat & repetitive muscle use, improve with rest and cooling´

And think.....´Hmmmmmmm. Now why don´t we just go ahead and try to rule out MG weakness, and lets take a few tests before coming to any conclusions´......


Anacrusis

I realized just how much good mestinon was doing this weekend. I haven't really been able to enjoy my oboe for over a year because when I have played, I got so out of breath that I would faint. My family wanted me to play with them. I had just taken my pill. I didn't get weak, out of breath, or even close to fainting. What a difference!

If I didn't have an understanding of the fact that stress makes MG worse, I would think that the whole thing was in my head.

My daughter has been extremely upset. She actually broke off her engagement today. I can't say that I am sad to lose a prospective son-in-law. I just feel so bad for my daughter. Tonight my tongue is half paralyzed. I couldn't really eat supper because I couldn't swallow. Getting upset caused severe symptoms; however, I really do believe it is because it brought out my MG problem.

I talked to her just now, and she seems to be feeling much better. Maybe the mom will be better soon too.

Stress is horrible for me. I had to have a colonoscopy today and my right eye almost completely closed. I got so weak I could bearly walk. I feel better now but a good nights sleep will really help. Oh I did have Colon cancer about 5 years ago before my MG came on. Plus my mom had a minor operation at which time they discovered she had MG. To make long story short she couldn't breathe on her on and we lost her. So I was a little stressed today to say the least.
Mike

The only thing doctors should be focused on while evaluating patients is the truth. Some people are hypochondriacs but they need help too.

Mike, Thankfully, the drugs do wear off but the effects do linger. Are you due for IVIG? Could you take a little more Mestinon? Try to stay well hydrated, that might help flush those drugs out. It is scary to have any worsening of MG like that when it causes severe weakness. I hope you'll call your neuro if you don't get better. As I've said before, I'm very sorry about your Mom. If only they had caught MG earlier. :hug:

Annie

Wow Mike. That's tough. Sorry to hear that. Scary too.

I think my opinion on this matter is well-known.

But, quite a few discussions I had with my neurologist about this made me (and I think also him) see it in a somewhat different way.

This is one example:

A patient with stroke requires treatment with thrombolysis-an agent that can (at least to some extent) dissolve the clot. This has to be given within a very short window of 4 or at the most 6 hours. This treatment is not without risk as it can cause intracranial bleeding.
My neuorlogist told me about a patient he saw which was given thrombolysis because she presented with one sided paralysis, she developed a serious complication of this treatment, but repeat CT scans did not show a stroke.

The argument between me and him is that he thinks it was non-organic (what ever that means) and I think it was not vascular, but could have been caused by a metabolic abnormality or another process he can not assess or see.

But, we both agree that it was a mistake to give thrombolysis to this patient.

Cardiologist who have to make similar decisions do not have this problem. Even if the ECG is non-diagnostic (which is relatively rare) they can do a coronary angiography.

Neither do hematologists, who can look at the blood smear under the microscope or if this is not informative enough, they can quite easily obtain a bone marrow sample.

About half of the patients an average neurologist sees present with symptoms he/she can't confirm with any test available to them. Yet, they have to make management decisions, just like other physicians.

Modern medicine is very unforgiving to mistakes. Neurologists are expected by themselves and society to reach an accurate diagnosis and give proper treatment just like any other field. Yet, they don't have similar tools, at least not yet.

Such unrealistic expectations lead to mutual frustration. Frustration leads to anger and even hostility. Giving a "diagnosis" solves this very well for the physician...

But, I think what my neurologist realized from discussions with me is the price of this convenient solution for the patient and also the long-term price his field pays by not recognizing and learning more about possible environmental toxins and other causes of not yet described diseases.

The problem is that most neurologists I have met are not ready for such a sincere dialogue with "patients",( mostly patients who dare to not fit their book !), and trying to create such a dialogue with them leads to a very hostile reaction.

Many neurologists who treated me with such disrespect, also told me that I have to understand that their field of practice is not as accurate as mine. I refused to understand their inferiority complex as justifying hostility and disrespect towards me. Nor did I think it justified their repeatedly endangering my life and well-being.

My neurologist does not have such an inferiority complex regarding his field of practice. On the contrary he is very proud of his profession and through his eyes I can see the beauty of neurology.

That is why, he is not intimidated by my criticism and sees it as constructive. That is why we can learn from each other.

But, unfortunately, most neurologists (at least those I had the "pleasure" to encounter) are not like him-they use ill defined made-up seemingly psychiatric diagnoses to cover their own ignorance and the lack of knowledge and understanding of their entire field. They treat with hostility patients who refuse to accept those ridiculous and non-substantiated explanations for their disabling and even life endangering symptoms. They expect their patients (whom they don't trust) to fully trust them. In my opinion they do not deserve the respect of their patients nor their colleagues in other fields.

There is no doubt in my mind, that honestly admitting the true virtues and limitations of their field to themselves, their colleagues and their patients (as my neurologist does) would have made them earn the true respect of their patients and colleagues and enabled them to help many more people even if they do not yet fully understand the mechanism of their illness. I am sure it would have also led to much more research and better understanding of those diseases they currently lump under "unexplained" (as if it were an explanation) instead of condemning them and the patients suffering from them to remain unexplained forever.

BTW, this is the reply I wrote to a fairly hostile e-mail I received from one such "bright and promising" young neurologist.

And this is taken from a paper written by a conscientious neurologist and psychiatrist.

Even if a problem is "all in our heads" or "psychosomatic" or "the crazies", it still has a cause. Psychiatric problems are real problems. When I was told that my MG was just a case of me being crazy, I was not referred to a psychiatrist for diagnosis. I was told to find a counselor. I wonder if a counselor would help diabetes, heart attack, and stroke.

By the way, for years I have had sleep issues. I have had nightmares and/or insomnia, and once I did sleep, I woke with severe headaches. A sleep study did little to reveal the cause. It only resulted in me getting drugs that made me worse. It is interesting how a little mestinon popped right at bedtime drove out my crazies. I sleep like a baby.

I´m sorry to hear that also.

Anacrusis

We highly appreciate your sharing of opinions old and new, and the really fascinating quotes, Alice

I fully agree with that, and they also need to be diagnosed correctly.
Hope things are going better with family and health today, and thanks for sharing your view on the effects of stress, Celeste.

So does anyone know? Do psychosomatic illness symptoms resemble those of MG?

Anacrusis

The answer is yes.

MG is in the differential diagnosis of conversion/functional disorder.

So if there are no positive tests for antibodies and everything else is normal, how do you make the differential diagnosis?

Can conversion disorder have a radical response to treatment due to placebo effect? Can this go on for years?

Also, there comes ptosis. I can imagine my legs week. I can't imagine my right eyelid to stop working correctly while my left one works happily along. Is this the deciding factor that makes the differential diagnosis?

And just out of pure interest,

Does conversion/functional disorder improve with use of Mestinon/other MG meds?

I think it's probably quite rare that all the antibody tests are carried out on a patient. I wonder whether we can ever be certain, in the absence of having done all tests for antibodies, whether an illness is psychosomatic or not...

I have a negative SFEMG and a negative acetycholine. On this basis MG has been ruled out in my case.

Clearly in the last weeks I have developed symptoms that are not consistent with MG. However, since these new symptoms haven't even been assessed I wonder how they can know whether it is related to what-ever-it-is or not.

I may be a nutter. There is no way of me - or anybody else - truly knowing the answer to that question. I have no acute 'emotional' problems that I'm aware of, but then, I might be repressing them. How can anyone ever know?

I was assessed by a psychiatrist right at the beginning of my being ill three years ago. He advised I didn't need any therapy and stated that I was clearly managing remarkably well, noting that he could not identify any psychiatric issue.

A psychiatric diagnosis is a diagnosis of exclusion; I have a negative SFEMG and acetycholine so I don't have MG. But if I have a negative psychiatric assessment, that doesn't seem to count for anything! I'm still a nutter.

Sometimes I think I MUST be mad because they don't find an answer.

I think everyone is a little bit insane in one way or another. Some of us also have other health issues, such as MG.

Much better today after 10 hours of sleep. Rest does more good for me than mestinon.
Mike

M.E. neighbours
 

I think I am most worried about our ME/chronic fatigue syndrome friends where the worst case patients cannot handle any muscular stimulation and spend years in dark bedrooms with curtains closed to the outside world. It´s as though they have continuous myasthenic symptoms that are not relieved by rest, and some interventions (also including exercise) have proved fatal. Normal well balanced children have also contracted the disease. I watched a program once about how the medical system had abandoned this group of patients and just left them to their families to care for at home.

The use of rituximab was used in trials a couple of years ago....
http://www.tv2.no/nyheter/innenriks/...y-3615631.html
But the last I heard is that they ran out of governmental funding for these experiments.
Maybe that´s why only 10 patients are getting the trial there which ends December 2013 -
whilst there are approximately 15,000 sufferers in the country.
http://esme-eu.com/treatment/a-drug-...le468-110.html


With a little distance to my own worst symptoms I find that energy & health trumps any diagnosis and all opinions,
I care less and less about WIW (whatever-it-was) and more and more about others having to go through the same palava as I did.

Its like Alan said - a lot of emotional support from friends yes, but would have been nice with a little more medical assistance where needed!
If my own symptoms ever return with avengeance then getting a good doctor and getting the right treatment is the most important thing,
Whether I would get it I don´t know, but at least now I know a little more about how to :)

This has always been my biggest problem like everyone else having had two neurologist and being diagnosed then not being believed i am a nutter and a very happy one how much easier it would of been to of had support and understanding from the neurologists I've always known that my ability is having faith in myself and not allowing that to be lost thou being told that I have chronic fatigue syndrome months ago by my neurologist ouch that hurt
I don't think it's a male female attitude my experience was and is the same
I don't think psychosomatic symptoms are the same as MG all the positive thinking can not stop the weakness nor can fighting the weakness thou mind and body are all one What is odd is the power of the mind man and dog can have symptoms of being pregnant a person can walk on coals and not burn or the super human ability to for a brief moment and what M.E CFS go throu has been and still is cruel. I'm waiting for a phone call for my other problem parathyroid and almost a year to find the problem the Dr has been great listening to my views. What I do know is how grateful I am for the questions and amazing input their is from everyone and knowledge
Alan:grouphug:

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.

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

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?

[/QUOTE]

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

[/QUOTE]

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.

[/QUOTE]

• 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?

[/QUOTE]

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
 

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

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.

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

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?

How exactly do you rule out everything?

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´ .....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.

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.

BTW, if I remember correctly, you had one negative blood test and a negative SFEMG.
That does not necessarily rule out MG!

I think you just have not yet had a good opportunity to meet with a competent specialist, and once you do, I think you may question your own disposition much less! One brief hour long appointment with an outstanding neurologist felt like
I achieved more in that one hour than I did during 2 long years with an incompatible doctor.

The pieces of your puzzle that are just annoying to the wrong specialist will feel like they are all falling into place quite effortlessly the minute you are sitting in front of the right one.

I think I´m getting a better idea of doctor/patient combinations the more practice I get.
But wouldn´t that make for interesting study?!

Wild_cat…..I just read about a well known sports personality he had been out sick for many months, from a so called ´mystery illness´ due to a virus as stated by the national paper – although doctors say they found no evidence of any virus whatsoever, nevertheless, this was most likely the cause of his illness!
Hmmmm…Let´s see…….:Hum:......Perhaps you are just in the wrong..... profession!!! :Doh: ;);););););)

Those are good questions and I wish I had better answers (I'll try to think of some).

The irony of that post was that I spent a long time trying to convince doctors that I have a real illness and any emotional problems may have stem from that illness, not the other way around.

When I was in college, the health clinic wouldn't see me until I saw a psychologist who put me in a group therapy for loneliness. Looking back I wonder who was more crazy--her for thinking bouts of weakness and tetness-like symptoms were caused because I was lonely, or me for being lonely.

That said, I think it is possible for emotional/psychological issues to manifest as physical symptoms. For example, depression can cause fatigue, but so can MG. In general, though, its too easy for doctors blame something they don't understand on psychological problems. I'm sure some neurologist at UVA would have loved to have me as a patient and been able to get a good case study, but they decided to send me for counciling instead.

If you don't mind me asking, what were the tetanus-like symptoms you experienced?

I recently got some symptoms similar to tetany and thought that it didn't fit in with the MG picture...I'd be really interested to hear your experience.

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.

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! :)

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!!!

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.

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.

:hug:
Annie

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.:eek:

People think that I am mad or depressed when I am not.