I just had the privilege of being at a lecture at McMaster University by the author during which she read some excerpts from the book. I could have listened to her speak for hours! I found it powerful, inspirational and educational. Bravo to her for having endured this horrible ordeal, choosing life and then for having the courage to write the book. My question is, having identified some of the serious problems in North American medicine, what can I, or we, do to change the way things are now (besides buying and distributing a copy to every health care professional) I would highly recommend this book be part of the curriculum for every nursing and med student on this continent for starters. As a layperson who is experiencing Post-Polio Syndrome I can definitely identify with at least some of the issues. Again many thanks to her!
I have had myasthenia gravis since 1998. I would love to correspond with you on what medication you are on and how you have coped with the disease. I prefer to correspond through mail instead of email. My address is 1918 Crestline Ave. Sheffield, Al. 35660. I saw an article in the “Marie Claire” December issue about you and your book. Would love to hear from you.
I was astounded the other morning when I listened to you talking about Myasthenia Gravis! It is indeed still, quite a rare disease. (My Neurologist actually told me that because it is so difficult to diagnose, there are probably quite a few people who have it and don’t even know it. Therefore they suffer in silence).
I too have had this awful, dreadful disease and luckily for me I had a thymectomy in 1991 and it completely disappeared. It’s as if I never had it. I went to hell and back with this horrible “curse” and by the Grace of God I’m still here. Needless to say it nearly killed me.
Am very, very interested in finding out more about the research taking place in this area. Would very much enjoy to getting a reply from you.
Will wait for your response. Lorene Puleo
Greetings Chloe Atkins:
I haven’t read your book. However, my second oldest daughter who lives in Calgary told me about a breakfasttv.ca program Body & Balance who did an interview about your case. It breaks me straight to the heart. For if your journey is anything like mine the mental and physical tolls are great. I am so thankful you found help.
I almost gave up when a Doctor at the Edmonton, Alberta University Hospital Emergency Ward treated me with abuse.
After my body rejected a 24 hour pain killer called Zytram. I was left struggling to keep myself mentally together as the ceiling in my house seemed to be caving in on me. I begged God to hold me together. Next, we waited in the emergency ward area for 5 hours to see a doctor; in pain that now racked through my body uncontrollably and caused me to jump up each time. Finally after another waiting area we saw a doctor. He was very rough in how he dealt with me. A blood test and reading my test from months ago which come up on computer. He told me,”Your not going to die”. I tried to respond but was told, ” You don’t seem to be greatful for that”. I was so overwhelmed with pain and his treatment of me, I shut up. They put me out in an area with 12 other patients getting IV treatment. Drugs to stop the pain only caused the pain to increase. I couldn’t stop the pain couldn’t he understand? I kept jumping up as the pain ravaged my body. I cried out to my husband & God. I just need it all to stop . The doctor came over and told me, ” If you don’t settle down I’ll have to dismissed from the hospital”. I couldn’t stop jumping up in pain. My husband asked the nurse was there anything else that could be done for me. She had to ask the doctor. A while later we were taken into another curtain area away from everyone else and I was told by him, “to go home and meditate”. No pain control. What were we to do? One nurse told us, ” if you need to come back’. However, if the University of Alberta Hospital won’t help; what are you to do? Hence, after four more hours of me unable to control the pain and jumping up at home. My husband couldn’t deal with it anymore and took me out of Edmonton to a small hospital. Their I received pain control. Which would require and other trip for pain control until the gamapentin began to slowly stop some of the pain.
I am left feeling less than human and that dogs are treated better in this day in age.
I sent a complaint to the University of Alberta Hospital. They had a meeting with the doctor but he wouldn’t recant. The hospital in a verbal response from the complaints department told me, “they were sorry and my letter would be used to teach other doctor’s in training”. Somehow I’m left with the feeling all was swept under the rug. I just don’t want to see anyone else experience such uncalled for treatment.
Over a 25 year span I’ve had so many MRI’s, scopes down my throat, GI scans, gallbladder test, dye’s that light up my insides, scopes through the bottom end the list goes on… I just had an MRI’s of the brain which has cause a trigeminal nerve on the right side of my brain to strike uncontrollably. Twice we have been to emergency department trying to kill the pain. I am left today hoping and praying an increase in my gamapentin will tame the beast. I don’t want to become addicted to any drugs.
I can tell you of doctor in the past who told me I was crazy then walked out.
Thank God my GP today hasn’t given up on me but has come to a point of not knowing what else to do. This pain started 25 years ago before I was told I have MS in 2002.
I still feel if they could just find out where the original pain started which is now ravaging the majority of my body things would be so improved.
I am pleased you are a voice for those who can’t speak out.
We are individual’s who are not only dealing with illness but the hurtful ignorance of those who are in the medical profession.
Thank – you for listening.
I would like to know how I can watch ‘Not Yet Diagnosed’. Please advise.
Hi Chloë ,
I am writing to you from a television casting company in LA. We are currently casting for a new show entitled ‘Diagnosis Unknown’ which is to air on Discovery in the Spring of 2015.
The show is a medical mystery show in which a patient has suffered various misdiagnosis until they finally found a doctor that properly diagnosed them and helped them to live a better life.
I have not read your book, and don’t know the details of your story, but based on the title and that which I did see it seemed like you may have a story to share so I wanted to reach out to see.
Might you be able to call or write to me?
I can be reached at 818- 563-4131 xt: 216
Hope to hear from you soon!
Hope this form of contact still works. I will keep it short as I am on my phone, but I wanted to say I was introduced to you today through a film we watched in my psychology (college) class today. It was a movie called NYD not yet diagnosed. While there was an obvious message and theme about the film, I wanted to say that I took away so so so much more from your story than what was on the surface. I am enthralled with your journey and am going to read and find out as much as I can. Thank you for never giving up. Your life is a beacon of truth.
Thanks for your comment. I’m surprised that the film is still around — I don’t een have a copy. Do you know where you got it from?
I am wondering if you might possibly have antibodies to lpr4 or agrin, although lpr4 would seem a more likely candidate compared to agrin. I am a person who suffers from MG as well. I just listened to your interview on the Leonard Lopate show. I relate to your story and am in complete agreement with you that diseases are not finite, objective matter. They are socially-constructed concepts based on limited information, and sometimes, market-driven, profit-motivated desires. I have researched this disease for many years, and along the way, have learned about other diseases. Many of them are one and the same, but are designated under different titles based on race, class, geography and time of occurrence. Oftentimes, people with MG have other illnesses, and there is a pattern in terms of which illness comes first. I have definately noticed that surgery and/or the use of prescription medications seem(s) to precede the development of MG more often than not. I wonder if this knowledge might have some influence on doctors’ willingness to diagnose illness in the context of recent medical treatment. ‘Liability’ sort of screams out to me. I believe that a good portion of the time, this disease might be iatrogenic, and that that knowledge on the doctor’s part might paint the doctor-patient relationship going forward. It’s unfortunate, but true. I suspect that the low density lipoprotein 4 antibody has only been discovered because of all the cases of myasthenia gravis developing during or after recent statin use, for example.
I have not read your book, but I certainly plan on doing so. I want to thank you for sharing an incredibly important perspective. The biases in the orthodoxy of medicine need urgent attention.
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