just decided to copy something from the book I am writing.
the name of my book is "for better and for worth" about my never ending struggle to receive better treatment and be seen as worthy person, despite the horrible sin of having an atypical presentation of a relatively rare illness.

July 17, 2008
In Dr. Seuss's "Horton hears a who" there is a climax, where Horton is prosecuted by all the animals in the forest. They ask him to throw away the clover, and stop talking "nonsense" about people living on a speck of dust.
But Horton is loyal to himself and to the who's and refuses to do so, and is even ready to risk his own life.
The who's now have to show the world that they exist, in order to save themselves and their guardian elephant. So they join all their forces and make a huge racket, until they are finally heard by the offensive kangaroo.
I could stop here and be content with what my neurologist is saying: that I have a diagnosis, which he has no doubt about, but that overall it does not explain any of my significant symptoms.
So what does explain them? An inadequate emotional response?
What also concerned me was that my neurologist never came to see me during any of those episodes. He only received an account of them from his residents. It was me and my husband's words against theirs.
As a physician, it has happened to me quite a few times that patients and their family members called me about problems they thought were not managed properly by the residents in the ward.
I always came to see for myself, and most of the times the patients and their families were right. And the reason for that is simple. Patients and their families live with their illness for 365 days a year, for 24 hours a day. They learn to know their illness best. How could a resident, that sees the patient sporadically, for no more then 10 minutes during the day, reach the same level of knowledge, especially if the patient has a rare illness or an atypical clinical course that necessitates more precise observations?
I was hospitalized in a large MG center, in the first place, because it was obvious that I had an extremely atypical clinical course that baffled the best neurologists . Did it make sense to decide on my management based on the typical clinical course that his residents knew so well, or did my care require a different approach? Was it reasonable to ignore again and again the same unusual response that I had to the steroids, that was very similar to what I had experienced before? Did it make sense to repeat the same mistakes that were done in the past? Wasn't he aware of the fact that my illness did not fit the book? Why assume that it would start to now?

And last but not least, what is a "normal" emotional response?

A few months ago, one of our patients had a late relapse of his lymphoma. This patient was a leader in his community, a very active and innovative man. He was always ready to help and support others. He came to our department on a voluntary basis, and was ready to do any task. He fully recovered physically and emotionally from the lymphoma he had eight years earlier. The recurrence of his illness was devastating for him, and he was trying very hard not to show his fear and anger.
He was not one of my patients, but I knew him very well, so seeing him, I asked how he was doing. He surprised me by asking: "do you think I am normal?"
"Of course you are" I said, not understanding the meaning of his question, at first.
"No", he said, "Do you think it is normal for me to feel this fear of death?"
"yes" I said," I think that when we are faced with a potentially life-threatening illness, it is completely normal for us to fear for our life, more then that, we not only fear our death, but we fear the way it will come. We know that we are not immortal and that the angel of death will come to us one day what ever we do, but we do not want him to come prematurely and more then that, we do not want him to sneak on us. We want him to come in an elegant manner, in a nice limosine, give us his hand and treat us with respect, and politely tell us that it is our time to go with him. We do not want him to come sneaking, deprive us of our dignity and self-respect and make us suffer for a long time."
I could see the smile returning to the patient's face. "You are so right" he said, "How did you know how I feel?"
We then joked together about the angel of death, and the need to feel that you are a "person", despite your illness.
I then went back to the question of "normal".
"I do not think there is any "normal" response to an illness", I said, "in order to define "normal", you need to have a significant group of people facing the exact same problem. I have seen so many different responses to illness that I find them all normal. I am only concerned when a patient stops caring, or feels he is unable to cope with his illness any more, and I do not mean a temporary moment of despair, but a much more prolonged response, that affects his entire life.

A few days later his wife came to me. She apologized for "wasting" my precious time. I told her that I did not see it as wasted time and I saw it as an integral part of being a physician. She then told me that the affect I had on her husband was amazing. Ever since he talked with me, He has become much less reserved and concerned and was gradually becoming "his own self" again, and that she too felt full of energy and hope, like she has not felt for a long time.
Now, 2 years later, I recently saw this patient again. He was in remission and fully back to his voluntary activities. "I am so glad you are back, I will never forget this discussion I had with you" he said to me when I returned to work.