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.

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. 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.

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.