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…….......Perhaps you are just in the wrong..... profession!!!

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.


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.

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