NeuroTalk Support Groups - Searching for the cause...

I fully agree that physicians should do everything possible to search for the cause of their patient's illness and not just treat their symptoms.

At the same time, with all the advances in medicine, many times the cause is not known and can't be found with those limited tools.

When do you stop searching? when should you be content that you have not missed something treatable?

Also, when do you decide that cure is not possible and you should find the best treatment that will improve quality of life, possible prolong it, but will not be curative?

Those are very hard questions that every physician faces numerous times through his/her professional life.

The biggest fear of a physician is that he/she will miss a treatable disease or that he/she will not cure a curable illness.

That is why patients are subjected to numerous and at times dangerous tests. That is why patients are subjected to aggressive treatments with severe side effects, which are very unlikely to help.

That is why many patients in whom a cause is not found, or there is no available curative treatment are neglected and left to fend on their own.

That is why many patients, when being honestly told that there is no known cause for their illness or no curative treatment seek further advise from someone who is ready to do more tests or give them more treatment.

Physicians and patients want to believe the fallacy of: if you only look hard enough you will find the cause of all diseases and there has to be a cure for every illness.

But, both physicians and patients pay a significant price for it. The price is guilt, blame and loss of the physician-patient relationship which is based on mutual trust and respect and knowing that both physician and patient have done everything possible to fight the disease together. The price is neglect of those patients who do not have a known cause of their illness or who do not respond to the "miracles" of treatment. The price is too many diagnostic tests and too much treatment.

Some of my friends asked me-Why are you so happy with your neurologist, what has he done for you? He doesn't give you any treatment other than symptomatic and supportive care.

Others asked me , why are you ready to give up? why don't you fight to receive better and more effective treatment?

And still others, over the years of my illness, were surprised that as a physician who always fights with her patients until the very end I am not fighting like that for myself.

I don't always answer or explain, but I know what my answer is to all those questions.

First, even if it seemed as if I gave up on myself or wasn't ready to fight, it was because my battles were quiet and out of your sight: They were in my physician's offices; They were over the internet with numerous e-mails to leading experts and scientists around the world; They were in the hours I spent trying to read papers and hours I spent thinking about them looking for every possible clue.

Second, I am happy with my neurologist because he is ready to treat me and do everything possible to find the best management approach, even though my illness does not respond to "curative" treatment; I am happy because he is ready to honestly admit the limitations of his field and medicine in general; I am happy because he is ready to share my frustrations with having an illness in which there is very little clinical research; I am happy because he is ready to think and learn together with me; I am happy because he treats me with respect and doesn't make me feel guilty for not responding to his miracle treatments and doesn't throw his frustrations on me; I am happy because he doesn't leave me alone to deal with it all, telling me that he has done his best and there is nothing more he can do; I am happy because he is honestly ready to admit his mistakes (even though with me he has done none).

The "cause" of my illness was found by a leading expert.
He told me now that the cause of your illness is known, everything will be different.

And indeed it was. I went from being able to work part time (albeit with significant difficulties) to being totally bed-ridden and requiring respiratory support most of the day.

This was because he gave me very effective treatment.
when he realized that the significant deterioration in my condition was "real" and not a figment of my imagination and not something that will go with "positive thinking" and "emotional support" , he lost interest. He was interested in curing my illness, getting me into complete remission after his brilliant diagnosis, and I when I failed comply with his expectations and plans he was no longer interested. For him, like for many other physicians, it was either curative treatment or nothing.

I trusted him, because I thought that he knew and understood the cause of my illness and therefore also know how to treat and monitor the results of this treatment. I trusted him because I thought he was truly interested in me and my well-being and not in his success in treating my illness.
It took me time to realize how little is truly known about the mechanism or true cause of my illness-MuSK MG, and how poor is the ability to monitor response to treatment.

For every patient in which there is a missed diagnosis of a treatable disease, there are numerous patients who undergo useless, painful and at time dangerous tests. For every patient who does not receive treatment for his/her illness there are numerous patients who receive treatment which is futile and leads to serious and debilitating side-effects because partial understanding is seen as the full picture and there is a lack of understanding of the individual response of different patients, even if they superficially seem to have the same cause.

A good physician knows how to order tests and give treatment. An excellent physicians knows when to order tests and when to withhold them, when to give treatment and when to withhold it. A good physicians knows when effective treatment is not effective for a given patient.

Both physicians (including excellent physicians) and patients can make mistakes. Both should not pay a bigger price than they should for those mistakes. Both should do what they can to minimize the consequences of those mistakes. Yet, trying to avoid mistakes at all costs, leads to much more mistakes.