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.

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.

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.