Chronic Illness Q&A with Dr. B.

larryB&W@300This question & answer column is for people living with chronic health challenges and their family caregivers, who want to learn to increase the odds of improving their health by learning to live with mastery & wellbeing.

I invite you to post your questions in the comments box below. When I get a certain number of related questions, I pick one that covers them all and I answer that one.

I post to this blog three times per week. Monday posts are relevant published articles. Wednesday posts are interviews—mostly video. Friday posts consist of questions about living better with chronic health challenges, and my answers to them.

QUESTION:  A few people have asked what to do when the best medical doctors have not been able to help. This is a continuation of last Friday’s column.

ANSWER:   Doctors do their best, but it is based on the state of medicine at this time. The field of medicine was far less effective in 1913 than it is today and a hundred years from now it will be vastly more effective. For patients as well as doctors, all that any of us can do is to make the most of where we are today.  

If you have been to the academic medical center in your area and were not helped, and you then went to a specialty medical center as I recommended last week, and still were not helped, then I recommend going to still another academic medical center in the hope of finding an expert who can help you. 

Here is a personal example of how I did that on one occasion: After 7-years on bisphosphonate treatment for dangerously severe osteoporosis, the metabolic bone specialist I’d been working with at UCSF Medical Center wanted me to switch to a new anabolic agent, but I noticed that it carried a black box warning—a lot of the rats in the studies had developed osteosarcomas. I wasn’t comfortable with that so I went to see the other top metabolic bone specialist at UCSF. He wanted me to stay on the alendronate I’d been taking for over 7-years. I wasn’t comfortable with that either because of some serious adverse events that had been reported when patients stayed on the drug beyond 7-years. I then got a phone consult with a top metabolic bone specialist at UCLA. He advised going for 3-years without any treatment (other than calcium and vitamin D) to see if my osteoporosis continued to worsen, and then revisit the issue.

I chose to follow his advice and 3-years later the DEXA (bone scan) indicated I was stable. I then returned to the original specialist I’d been working with at UCSF to see if the new results affected her recommendation. Based on the new radiographic evidence that I was stable, she recommended no further treatment. I still have dangerously severe osteoporosis (T-score of -4.6) and will want to continue getting bone density scans every 2-years, and continually revisiting the issue of medical treatments.

I shared this story as an example of how there are often no clear answers and no clear treatments that even the top experts can agree on. This is one of the reasons I recommend and write about learning how to become the team leader of your healthcare and your self-care. Whenever there are no clear treatments, it is up to you to gather the best evidence and opinions you can find, and then make a decision. If you are not up to the task, and you can afford it, there are people to hire who will review the literature for you and will find out who the best experts are for your particular diagnosis.

 This website is offered as a free public service, supplying information that has been found helpful to certain people living with chronic health challenges. No treatment is offered on this website. The advice is general, and may or may not apply to your individual situation, and is not a substitute for psychotherapy or medical treatment.

What questions do you have about how to live better with chronic health challenges that are related to the relationship between states of mind and health? 

Just scroll down and type your question in the comment box. I will post a reply to your comment, but your question may not appear in this column. 

2 replies
  1. José Vázquez says:

    It is not a query, I simply are describing a PROBLEM.-

    I think the problem for clinical doctor is to know when a patient’s discomfort is totally imaginary, but with true suffering.

    • Larry Berkelhammer says:

      Hello Jose,
      Discomfort and suffering are not usually imaginary. However, chronic pain, fatigue, malaise, and many other symptoms sometimes fail to get diagnosed. When doctors fail to find any evidence of disease in lab specimens or radiographic evidence, they sometimes wonder if the patient’s symptoms are imaginary. My advice to those patients is to go to an academic medical center where doctors are more likely to have seen other patients with the same cluster of symptoms. Of course, there are people with hypochondriasis; those people really do imagine themselves to be sick, but that is far less common, and those symptoms are usually acute rather than chronic.

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