This is a book by a woman who was eventually diagnosed with an atypical form of myasthenia gravis, after years of being told her illness was psychosomatic. It was so severe that she became a quadriplegic, and actively pursued euthanasia. Her book is subtitled "A Journey into Uncertainty and Prejudice in Medical Diagnosis." http://www.cornellpress.cornell.edu/...taf?ti_id=6014

I hope this doesn't discourage anyone, but I post it here because I know it will be of interest. Also, I really do think that books like this are heralds of change in the medical system. The success of this book at least means that people are willing to listen.

My thoughts are with those of you who are still fighting for a diagnosis. Don't give up.

Abby

Abby, I was glad to see this. It is important to share stories like this to help normalize the situation. Folk like myself who are so deeply weiry from dealing with situation need to know other are out there. I experience this first as a trauma survivor. One of the biggest tools that help are groups where this very thing is done....Sharing of stories.

I just purchased the book at Amazon as with me on disability every penny counts. They had a used copy.

Good one Abby!
Annie59

Oh, good, Annie. I was hoping you wouldn't find it discouraging. I wrote to the author--I don't know if she gets this sort of email all the time or not--just to tell her that those of us who have had, or are having, trouble getting a diagnosis really appreciate her work to make her experience better known.

This may be stupid, but when I first started getting symptoms, I didn't understand even what the symptoms were, much less what was causing them, and I thought I had either a brain tumor or MS. But even then, my biggest fear was not that I had some horrible disease--it was that the doctors would think it was psychosomatic. So I sort of understand what you're going through.

Abby

I read a bit of this book as a friend emailed it to me. I have to say it has mirrored some of my own experiences.

When I have been admitted to hospital - not for neurological issues but others, the medical staff are very cautious as they say I have an undiagnosed neurological condition.....probably MG. Yet three possibly more neurologists all say neurologically theres nothing wrong with me. Chloe is right there are too many polictical disputes in medicine.

How is it that Neurologists can state in their own publications that 60% of their outpatients have nothing neurologically wrong with them? What other area of medicine says that about its patients? It makes no sense to me.

Thanks for posting this, its frightening but unfortunately too many people have first hand experience of being treated this way.

Rach, about the 60% remark. Honestly I see that as an arrogant, ignorant over statement. Just think about it. That makes them look better in the face of many hard to diagnose diseases. My impression is that neuros have just enough psych training to be dangerous to those of us who are hard to diagnose. I wondered about this at a certain point but I am now convinced. I saw a physcologist a the university around my memory about 3 years ago. After the bulk of the testing a student had done he came in and said It didnt amke sense to be that happy and free and of anger and upset! I asked him if he was suggesting I was not being honest. He smiled and began to ask, push , press about emotions I may have had in the last 6 months. I finally being the intensely careful and caring person I am with my family admitted I said something to my son-in-law after aI remark he made and was upset by that at Thanksgiving dinner. Aaa HA!! you could see in his eyes. OK so his report said that I suffered from some annxiety and should of course consider therapy. What an idiot , an irresponsible idiot.

Furthermore it is immoral to leave someone like myself hanging out there with so many sever symptoms at the point my pcp says, "well maybe you need to be in a nursing home." THAT would be proof positve of the idiot medical system I am stuck with here in central Iowa.

Annie59

Thanks for posting this, Abby. I couldn't deal with it at first - it hits too close to home.

Annie59, I imagine this is where you are at, wondering if someone will find you some day, unable to move. I really hate the state of medicine.

Here's a good excerpt from the book.

http://www.calgaryherald.com/imagina...840/story.html

I just bought it too. I think she could use the money.

Annie

Yeah, I sort of hesitated to post it for that reason--that it might hit too close to home for a lot of people here. In the end I decided the main message is one of hope, because the book is published in a series called "the culture and politics of health care work." It means that stories like this are starting to get through to the medical profession.

The excerpt I read really stunned me. Since I'm seronegative and my symptoms are atypical, I could easily, easily, easily have been in her position. The neurologist who diagnosed me said he's seen 800 MG patients, and not one of them has my gait. I found out afterwards there's a known psychogenic lurching gait syndrome. So I feel like I dodged a bullet. And as always, I'm rooting for everyone on this list whose symptoms aren't being taken seriously.

Abby

Abby,

Thank you for posting this!! My experiences have been the complete opposite of many. My neuro wanted to prescribe Mestinon before I had any positive test results. It was my own need for validation, and some kind of proof that it was indeed MG. I didn't want to be treated for a disease that I might not have!! Thanks to HIS persistance I started Mestinon, I wish I had followed his advice just a bit sooner.

Her story and that of many others breaks my heart, each and every day I am thankful I have the doctor's I do. What some people must go through to get proper treatment and a diagnosis astounds me. I will read this book with the hope that perhaps others will find the strength to endure what comes their way, all in the name of good medical care.

Once again, thank you for shining a light on this stroy for us!

Rachel

I briefly went over parts of this book and there are two things that caught my eyes which I found very disturbing-

the first- this patient had severe generalized myasthenia with respiratory failure, response to acetyl-choline-esterase inhibitors and other commonly used treatments, but no neurologist was ready to take responsibility over her care, after many years of mismanagement.

In a dire state, after a very short and inadequate course of treatment in the hospital, she was treated at home by her GP and her partner was concerned that she would die. We are not talking about a demented 80 year old (who I do not think should be treated like that either), but a 35 year old talented woman, who we can read in-between the lines was sent to die in misery at home, of a treatable illness. This would have been considered malpractice if she had a heart condition, severe infection, malignant disease, but apparently not MG, or suspected MG. or maybe I am missing something?

the second- this book was written by a patient with a neurological disease, but the commentary was written by a psychiatrist. why would that be? why isn't there even one word in that commentary about this illness and the way it is managed? why isn't the general management of MG discussed? the problems in diagnosis, assessing severity and response to treatment? the very long time it takes for patients to be diagnosed? the horrible consequences of this approach? the true risk of death because of medical neglect? why isn't even this very problematic and ill-defined diagnosis of "conversion disorder (that was written on her chart, but never fully conveyed to her) discussed by this psychiatrist?

this patient did not have a psychiatric illness. she was wrongly diagnosed ,by exclusion because of the ignorance and arrogance of some physicians as suffering from one, so why should a psychiatrist write the clinical commentary on her illness, of which he doesn't seem to know much?

I looked at another book in this series, written by a patient with chronic pain. This book had an excellent commentary written by a physician taking care of patients with chronic pain-a pain specialist. he discussed the problems of this specific condition in a way that I could learn from as a physician. addressing all the dimensions-the physical, emotional, social of this medical problem, and mostly the shortcomings of those that are supposed to treat patients with chronic pain and what should be done about that.

what can a physician learn about MG and the problems in diagnosis and management of this illness, from this psychiatrist's commentary. how is his commentary related specifically to MG? and how can we expect anything to change if when discussing diagnosis he turns it into some vague discussion, when this book was written by someone who nearly died because of a wrong diagnosis.

would a commentary in a book of a patient who nearly died from cancer that was diagnosed very late, because physicians failed to address severe symptoms caused by it, discuss "diagnosis" in a similar way?

alice

Alice,

You're right--that's really disturbing. What do you think is going on here? Is MG somehow not being recognized as a bona fide disease, even though the mechanics of it are known?

I mean, I know there are some diseases that are recognized as real, like fibromyalgia and chronic fatigue syndrome, but whose causes aren't fully understood. I know that since the causes aren't understood, there's a prejudice against them. But I don't understand why MG would suffer from the same prejudice, since we know exactly which part of the neuromuscular junction is being attacked, etc.

Abby