A childhood accident brings unexpected adult repercussions + Where to turn for help after a scary new diagnosis.
Question: When I was a teenager I was shot with a BB gun and fragments spread throughout my head. In 2006, I underwent an MRI, and since then I've had various unexplained ailments including hair loss and headaches. My primary care doctor denies that any damage was done as a result of the MRI. But another doctor told me to never have an MRI as it could cause all sorts of health problems. What are my options here? Can you help me?
Leslie Michelson: I'm so sorry for the confusion and fear you must be feeling. Rather than get another opinion from another doctor, I would suggest that you secure a consultation with a senior radiologist (not a radiation oncologist, but a radiologist) at one of the preeminent academic medical institutions near you. Send that doctor's staff your medical records ahead of time. Then sit down with him or her and review your medical history and the BB gun incident from years ago. Obtain the benefit of their advice as to whether they think having another MRI in the future might be dangerous. You may want to ask if there are other technologies that might be dangerous for you.
I think it's vital that you gather this information now, while you're relatively healthy. Because in the event of an emergency, where you may need imaging done, you want to be clear about any dangers you face so you can weigh your options. Be sure to get written instructions, with detailed information about any limitations, so that this information is unambiguous and available for subsequent physicians at any time. You might also want to wear a medical-alert wristband, one that indicates “No MRI” (or any other information relative to your condition). God forbid, if you were ever in an accident and became unconscious, emergency medical responders will instantly know of your health status and avoid unknowingly putting you in harm’s way.
(*Editor’s note: You can also find free, downloadable forms on our Helpful Tools page to help you create a medical emergency inventory.)
Question: I have your book and I find it fascinating. I have recommended it to all my friends on Facebook as well. A relative of mine has been diagnosed, by his primary care physician, with primary myelofibrosis, a chronic blood cancer in which excessive scar tissue forms in the bone marrow and impairs its ability to produce normal blood cells. I can't find helpful info on PubMed. Can you recommend a best source in the U.S. or Canada (we are both in Canada) for exploring this disease?
Leslie Michelson: Tackling a new diagnosis can be scary. But it’s important for patients and their families to know that they are not alone. There are dedicated professionals out there, who have committed their lives to curing the disease. That’s why it’s so important to connect with the major philanthropic research foundations. These institutions can help in three ways:
1. They can bring patients and their loved ones up to date on the latest research findings;
2. They can connect you to others in your community who are dealing with the same issues, and who have experience and advice to share;
3. They can help you to identify the preeminent experts—physicians, researchers, and others—who are solely devoted to tackling your disease.
I applaud your efforts to be a good quarterback for your relative, and to seek out more information. When I'm conducting a search for an expert, I like to review the advisory boards of the top disease philanthropies. I suggest you both visit the website of the MPN Research Foundation. Take a look at MPN’s scientific advisory board, which lists esteemed experts from across the United States. Call one or more of them, explain your situation, and ask whom they would recommend as a specialist in Canada.
More good options: On the left-hand side of the "Living With" page, you'll see a "Help Me Find" button that provides a crowd-sourced list of patient-recommended experts around the globe (many of whom practice in Canada); contact information for support groups near you; the latest information on clinical trials, and much more.
One last suggestion for all patients facing a new diagnosis: Always sign up for the newsletters sent out by the major foundations that focus on your illness. It’s one of the easiest ways to stay up to date on the latest news about your condition.
Very often, when patients are given a new diagnosis, they feel alone and isolated. But please know that your counterparts are out there, at these disease-specific foundations, just hoping you will be in touch.