"My Imaginary Illness" by Chloe Atkins
 

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:hug:

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

we don't. this is where the problem lies. the understanding of most disease has significantly evolved over the last 20-30 years, as did better treatment approaches, stemming from this understanding. the understanding of MG has stayed exactly where it was. even worse, it seems that neurologists are even more confident then before that they know it all. therefore anything that is out of that box, just doesn't exist.

That is why a patient that had a very typical clinical picture of MG from day one (there are very few diseases that can cause such changes in muscle strength from one day to the other, in the way she describes) required respiratory support due to her illness, responded to achetyl-choline esterase inhibitors and plasmapheresis, but probably did not have a diagnostic SFEMG or antibodies to support this diagnosis was not treated as MG by any neurologist.

a normal SFEMG during such severe weakness "rules" out MG. is there anything in the medical literature to support this notion? no, there isn't. in fact there are very few studies done on SFEMG in seronegative or MUSK patients and those show that doing a SFMEG is about as good as tossing a coin.

can myasthenic weakness be without abnormal transmission of the electrical signal at the NMJ. of course it can. there are so many things that can go wrong after that on the way to proper muscle contraction.

myasthenia is not one disease, but many, each is very different in its cause, clinical course and response to treatment. I believe that there are many patients like chloe, but only a few that can articulate their experience in such a way. many are treated in this manner, but are not able to fight it, and just succumb to their illness and the way they are treated. I believe some probably die without us even knowing about it. wasn't she very near to that? possibly internet support groups like this one (that did not exist when she was struggling with her illness) may change some of this, by giving such people hope and support and feeling less isolated with their ordeal. but, without knowing what your illness can be, how do you find one? she is not a physician and probably never heard of MG during all those years.

when I hear those horrible stories, I can't avoid thinking how fortunate I am to be a physician and be able to take care of myself, and although I have my share of humiliating experiences (which in a way are harder, because those are my colleagues), I have taken care of my crises at home, where I don't have to face those idiots, and can manage my illness in the way that I think is best.

I remember how relieved I was when after one of my more traumatic hospitalizations (the last one in a neurology ward, as I promised myself that what ever happens I am never going to be hospitalized in a neurology ward again after that), when having severe shortness of breath I was surrounded by my loving family who quickly put my respirator mask on, and I thought how great it was that no one was trying to measure my VC (only to document it on the chart and do nothing about it) or tell me that I am "doing" this because I do not want to go home (as I was home).

A while ago I asked the head of our ICU (who has been of tremendous help, like almost every physician who is not a neurologist or has not been influenced by them) under what circumstances it would be dangerous for me to be at home and I would require intubation and not NIV. he said that he thinks this is not likely to happen, as I have learned to master my illness so well. recognize early signs of respiratory compromise, use my respirator before further deterioration occurs, avoid aspirations when I have difficulty swallowing, and mange to overall keep a reasonable caloric intake.

every now and then I make the mistake of trusting a neurologist again and thinking that he is going to be different, he is going to be able to think out of the box, he is going to understand that atypical MG is still MG.

but, until now I have always been proven wrong. none of them was capable of that, or of understanding the respiratory manifestations of this illness, in a patient that has learned to live with it, using intermittent respiratory support.

alice

this is perfect timing~that is exactly what i feel like. today especially after that appointment at UCLA. i am going to get a copy i think it'll be inspirational.

thank you.

Alice, This is the exact thing I said to my daughter today. I said sending home a 59 yo woman like myself untreated is malpractice. This blaze' treatment is stunning to me. I dont get it other than to put it in the context OF the 'unstoken' to me that it just somatic because I went thru a trauma. NEVER do they respect me enough to let me discuss how I was thoroughly and amazingly treated. Treated by the best and because of my resiience I believe had been told many times I dont have the signs/ dont look like a trauma survivor. Its like proven fact that all soldiers dont come home from war with PSTD. People are made different. They dont all end up as too many think, homeless drug using PSTD survivors.

Annie59

Abby, Thanks for posting this. I ordered the book too! I'm someone who has a typical presentation of MG, but do not have any positive tests. Although I have had a good response to Mestinon.

I think those who have atypical presentations or those who don't have positive tests really confuse neuros. I'm thankful that my PCP said that he thought I had MG based on things he noticed on exam, my ptosis, and my symptoms which "screamed MG".

Thanks again.

My book came in the mail yesterday. I can't even begin to describe what it's been like to read this book. Her story is truly heartbreaking. So much that happened to her was truly unbelievable. In fact, I could see where someone who hasn't been caught up in the diagnosis maze could read it and not believe it.

Much of it has to do with the fact that once she was labeled with having Conversion disorder that diagnosis followed her every where she went. Once her records caught up with her the medical professionals immediately believed the records regardless of what was happening to her at the time. She was even booted out of the ICU and taken off of the vent and told she needed to try harder!!

It has certainly brought up a lot of stuffed emotions, but it has also made me see that this type of thing is not that unusual and that we need to be in charge of our own health care or have someone who will advocate for us.

It's definitely worth reading. I can think of a few doctors I'd like to mail a copy to. :D

Shalynn, I got mine too. I couldn't bring myself to read it. How traumatized does someone have to be to not be able to read someone else's trauma. It's too close to what I've gone through and I think - at least right now - and it would provoke my PTSD too much. Maybe after I get some decent care for my MG. :rolleyes: How sad is it that so many people have had similar experiences.

Annie

Annie, It is sad, isn't it? And, you are right. We have been traumatized. I think you are wise to wait a bit before reading the book. While I was reading the book I sort of had this feeling that you do when passing a horrible car wreck; you don't want to look, but somehow you can't help yourself. I also just wanted her to get help. I couldn't stop reading it until she got help. She'd get close, then her hopes would be dashed yet again. I wanted to scream!!

I think what I want to take away from my experience of being ill is that changes need to be made. I want to do something, even if it's on a small scale, to help those changes happen. Maybe Chloe has started a movement. Let's hope.

If anyone wants to discuss the book with me you can pm me. Maybe we could have an online book club?

Hang in there everyone. And, thanks again Abby for posting this.

I am glad Chloe published her book, I have hopes it will make a difference, and a part of me wants to read it...but I am with AnnieB, I don't think I can handle the emotions, I think it will trigger my PTSD as well.

Annie, I think a person has to be severely traumatized to be able to feel so strongly the trauma of others. I hope you find something that helps you feel better.:hug:

I don't like to see people mistreated and somehow after getting PTSD my body reacts in defence for anyone, my heart pounds and I can feel the adrenaline (for a short time all my MG symptoms go away when this happens), and afterwards my MG symptoms get severe. Sometimes I think my MG is an extension of PTSD since they seem to go hand in hand for me.

One of these days, I'd like to read this book.

Shaylynn, I'd love to join an online bookclub to discuss this book.

(I am laughing at how opposite these two statements I made are...but I do love to read!)

I received my copy yesterday. I found it very difficult to read. My MG experience was nothing like Chloe's. But as a nurse I was ashamed of the treatment or lack there of Ms. Atkins received.

It made me think back to the beginnings of the spread of HIV/AIDS. Many medical professionals would refuse to treat HIV patients. Again I was ashamed of members of my own profession!

If a condition is neurogenic or psychogenic in nature ALL patients deserve kindness, compassion, and the right to be treated with dignity and respect.

Ms. Atkins story is one of hope, determination and courage. We can all gather something from this book. We are our own advocates, only we can make our voices heard...

Thanks again Abby for sharing this book with us!

Rachel

This is very interesting. So even myasthenia gravis gets called a "mental illness." Seems as if anything doctors do not understand gets called by some DSM diagnosis. So simple. Now I have heard of heart disease as well as an adrenal tumor being called "anxiety disorder" and endocrine issues being called "psychosomatic" and even a real vision problem at first called "mental". Lupus. Lyme Disease. Narcolepsy. Kleine-Levin syndrome. Parasites. Sjorgens. And the list goes on. How utterly absurd and infuriating!

The book "It's Not Mental" by Wolfson (link here: http://itsnotmental.blogspot.com/) is one more new story like that. Talk about "Prejudice in a Medical Diagnosis"!!! And all over the Internet people have their horror stories.

I just got my book but havent gotten into it. Too sick and vision worse.

AnnieB3 I did skim your excerpt. The piece about missing record segments reminded me of trying to get my birth records for my youngest daughter. I beleive she was not breathing when she was born, in some real distress.I know for a fact that I was torn from stem to stern thanks to his way to generous use of pitocin to get him done with me. I asked to see her becaue I heard nothing. I actually begged fianlly. I was refused. They took me to my room and expected me to sleep not knowing if my little girl was all right! I was there a long time being sewn up and never heard any baby sounds. There was alot of activity around her too. Well I had my payback so to speeak. When the doc came early the next morn to tie my tubes I said NO. Honestly I wasnt gonna let that guy touch me again:mad::mad: and I told the nurse that.

When I requested this record it was missing.

After I moved to where I am now I discovered taht he had left town, that doc, after a bunck of lawsuits. I think this is why my daughter has Epilepsy.

Annie59

For Mycha's mom
 

Just wanted to bring this thread forward for Mycha's mom:hug:

I am glad that you shared this. I have been always a happy person that loves life even when things are not going right and I have always been physical but I know when something different is going on in my body and there is no way I am causing it. I hate not being in control of my own life. So I can really relate with this book even though her symptoms are worse than mine. I can not imagine someone in that shape being told it is in your head. That would send someone in depression.

My Imaginary Illness
 

Sandy,

Thank you for bringing this thread forward for me. I just went and previewed the book on Amazon and reading the preview portions is like observing my daughter. My daughter too is nearly quadrapeligic and told it's psychiatric.

Right now Johns Hopkins and Duke are both reviewing the 70 pages of tests and med records they requested to see if they believe they can be beneficial in evaluating/treating Mycha.

Just praying.

Mina Hansen

I really hope she gets the help she needs. She has the antibodies. That is a diagnosis.

I was told by multiple doctors that I was a poster child for depression to which I replied, "I wasn't aware that depression causes double vision and slurred speech".

One physician and friend of family (in fairness he doesn't specialize in MG) was so adamant that this was all in my head that he challenged me by saying, "well prove it to me and just try an SSRI". I left there feeling so outraged I thought I was going to explode or implode - either would do.

I collected myself and told him at a later date that his assessment couldn't have been further off and his hubris was deplorable. He surprised me and apologized.

Like most of you, a dx for me was much better than the madness of living in fear and uncertainty. For all the undiagnosed patients out there, I send you extra positive energy and hope for answers.

Thank you - we have order this book and I hope it has information that can help us undo this quagmire we've found ourselves in.

Mina Hansen

How were you able to finally get a doctor to believe that this wasn't just "all in your head" (ie depression)? And where did you finally find adequate/appropriate treatement?

Thanks,
Mina Hansen

Mina -

My best weapon was my iphone. I started recording every flare...every time my ptosis kicked in which is VERY remarkable I was sure to document. I recorded my slurred speech and my labored breathing.

This, for me, was the big turning point where my drs were like, "Oh, ok this is clear evidence" (still not sure why any dr would think we are dreaming up symptoms?!! Slurred speech/droopy lids are so sexy that of course I'd want to exaggerate that.... :mad: )

I also cut ties w any dr that seemed unimpressed and tossed them in the "useless dr bin".

Good luck.

PS Mina I had the worst exp at MG/MDA clinic and much better success w a "regular" neuro.

My current neuro said that he could see how someone could think that weak muscle in your legs and arms could be psychosomatic. Breathing issues could be the same. But not the ptosis. Especially if it is worse in one eye.

But even if I try, I can't figure out how to make one eyelid sag severely while the other one stays up. You just can't fake that.
;););)

I really enjoyed reading ´My Imaginary Illness´.

A book I stumbled upon on Facebook may also be of interest to some:

http://www.amazon.com/Mutiny-body-ru.../dp/148263158X