Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My heart goes out for every member who is still waiting on a Diagnosis. I get so frustrated hearing of so many horror stories dealing with doctors and medical staff.
The art and science of clinical diagnosis are at the heart of the practice of medicine. But recent study of the accuracy of the diagnostic process in practice has uncovered the uncomfortable truth that more than 150,000 patients per year may undergo considerable preventable harm from incorrect diagnosis. Misdiagnosis is both widespread and deadly.
The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.
Words to change medicine by.
Leslie Kernisan, MD, MPH
I believe it is incumbent that we participate in our medical care. How do we do that?
I would like to share the following resources that I have found has helped me become a stronger advocate in my care.
When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests by LeanA Wen MD and Jousha Kosowsky MD
http://www.amazon.com/When-Doctors-Dont-Listen-ebook/dp/B008BU6ZAK/ref=tmm_kin_title_0
"This is a well-written book on an innovative approach to healthcare reform: it challenges patients to take charge of their health and every medical encounter with their doctor. An important topic and an important book--I encourage my patients to read it."
--Siddhartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer
"Let Patients Help"
http://epatientdave.com/let-patients-help/
http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html
"Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment" by Leslie Kernisan, MD, MPH
http://thehealthcareblog.com/blog/2013/05/22/medicine-in-denial-what-larry-weed-can-teach-us-about-patient-empowerment/
This is the 3rd article, be sure to click the links for the first two articles.
http://e-patients.net/
There are many other resources. Please add to this list.
Also please share any stories of self advocacy. What did you do and how did it help?
Wishing you the best and that everyone is allowed to participate in their care and able to get the very best care and diagnosis.
Bruce
The art and science of clinical diagnosis are at the heart of the practice of medicine. But recent study of the accuracy of the diagnostic process in practice has uncovered the uncomfortable truth that more than 150,000 patients per year may undergo considerable preventable harm from incorrect diagnosis. Misdiagnosis is both widespread and deadly.
The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.
Words to change medicine by.
Leslie Kernisan, MD, MPH
I believe it is incumbent that we participate in our medical care. How do we do that?
I would like to share the following resources that I have found has helped me become a stronger advocate in my care.
When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests by LeanA Wen MD and Jousha Kosowsky MD
http://www.amazon.com/When-Doctors-Dont-Listen-ebook/dp/B008BU6ZAK/ref=tmm_kin_title_0
"This is a well-written book on an innovative approach to healthcare reform: it challenges patients to take charge of their health and every medical encounter with their doctor. An important topic and an important book--I encourage my patients to read it."
--Siddhartha Mukherjee, author of The Emperor of All Maladies: A Biography of Cancer
"Let Patients Help"
http://epatientdave.com/let-patients-help/
http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html
"Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment" by Leslie Kernisan, MD, MPH
http://thehealthcareblog.com/blog/2013/05/22/medicine-in-denial-what-larry-weed-can-teach-us-about-patient-empowerment/
This is the 3rd article, be sure to click the links for the first two articles.
http://e-patients.net/
There are many other resources. Please add to this list.
Also please share any stories of self advocacy. What did you do and how did it help?
Wishing you the best and that everyone is allowed to participate in their care and able to get the very best care and diagnosis.
Bruce
If you don't advocate, jump up and scream, you do not get anywhere. My last PC refused to ever talk with me on the phone for clarification. Make an appt and talk in 2 wks so I can try to remember who you are.
I found MG on my own. If I don't get a diagnosis, ill be shocked. I think the lack of ocular involvement at that time is what deterred my last neuro from considering it. No docs seem to look at a big picture? Think outside a box ?
When I told him that I get periods of weakness and heaviness in my arms and legs, and he saw the strength was minimal in my legs, he told me to ignore the weakness. Just exercise through it. ??? I realized he had NO idea of how I really felt.
Thanks for the info!
I too, am shocked - at the state of modern medical practice and diagnostic skills.
It seems: the more the diagnostic technology advances, the less is the skill of the people using it.
Of the scores & scores & scores of doctors, who have examined me, over the last 8-months?
Only a half-dozen physicians have had the personal diagnostic skills - to contribute towards my recovery.
I am extremely lucky, that among these half-dozen physicians, chief among them is my Neuro. Without this person, I would have passed on, many months ago.
The rest of these medical types? Outside the half-dozen?
All they have done - is line their bank accounts, at the expense of Medicare & the American Taxpayer, without contributing one iota towards my diagnosis.
In the last day or so, I read a quote somewhere, saying that our medical-system needs a wholesale change in philosphy: Physicians need to be paid for ''results'' - and not ''services''.
I could not agree more.
My previous muscular neurologist gave me an MRI and since it came back normal he was ready to dismiss me. I asked him what about my muscle weakness, droopy eyelid, shortness of breath, etc. He asked me "what do you want me to do?" So I asked for the AChR antibody test. He ordered it for me, but I changed neurologist before the follow up appt. What neurologist asks the patient what to do? No way I could possibly trust him with my health care.
Most important research reputable web sites so you can participate in a back & forth conversation with your doctor, keep records of all lab tests, Ct scans, MRI's etc. in a binder for yourself with dividers for each specialist, and most of all trust and believe that you do matter!, Marina
The medical system worked beautifully for us, but we all need to arm ourselves for whatever our bodies throw our way. I just found multiple copies of the first book in my local library. Thanks for the tip!
So what I have found that is if I tell what did not work to somebody they can sometimes figure out a better way and once a way that works is found stating it works before going into the hospital can make a big difference. I am keeping a file of anesthesiology notes to pass along to the next anesthesiologist I use so he/she will have an idea of what worked well for me.
Communicating what doesn't work as well as what does work can lead to better results. Marie
"you just need to do interval training at the gym"
"MG ALWAYS presents in the eyes first"
"you just need to manage your stress better"
"Cellcept is not a treatment for MG"
"you're just hypersensitive about your breathing because you're a healthcare professional"
I feel like I am tilting at windmills- largely because of the neuros' ignorance about MG. Sometimes I am more knowledgeable about the disease than they are, which is absolutely PATHETIC. I am currently trying to get up the nerve to see neuro #7 in my attempt to get a definitive MG diagnosis. :-(
IT IS SHOCKING AND I FEEL SO BAD FOR PEOPLE STRUGGLING WITH THESE ISSUES.
I hope we can bring support and comfort to those gaining effective treatment.
Once we see that doctors are humans and they depend on us too to be advocates for ourselves, we can be a team member with them. I do know there are great neuros out there....it is our job to find them.
Ann
Now it is my turn to learn. You all are great.
I have heard it is common to misdiagnose MG, so perhaps it is to be expected. The rate of MG used to stand at about 2 per 100K. But I recently read that the rate is increasing because of the Internet. I guess people like my wife are figuring this stuff out without the "help" of a neuro.