4 posts tagged “self-advocate”

How to prepare for a doctor’s appointment: 7 tips from member Cathy

Posted 2 months ago by

Ever feel confused or overwhelmed after a doctor’s appointment? Forget to ask important questions or bring up new symptoms? Covering all of your concerns in a 30-minute appointment can be tricky. MS community member Cathy can relate — read on to see how she’s learned to make the most of her appointments and check out her 7 tips for getting the answers she needs.

In 1986 I noticed something was awry when my legs were completely numb, my arms were weak, and I was always physically exhausted. I felt scared, isolated and confused. I scheduled an appointment with my internist who referred me to a neurologist. After a spinal tap and CT scan the tests were conclusive. I had multiple sclerosis.

I was happy to have a name for what I had but that didn’t diminish my confusion. I decided my neurologist would lighten my emotional load at my next appointment and, like Scarlett O’Hara, I’d think about it all another day. In hindsight I realize this was not a good plan.

Learning how to self-advocate

One of the most important lessons I learned over the last three decades is you must always advocate for your health instead of letting others do it for you. Self-advocacy must be our number one priority. In today’s health care climate, when doctors are often inundated and pressed for time, it’s crucial to get answers to our questions during the thirty minutes or so of medical appointments.

As Megan Weigel, a Doctor of Nursing and the president of the International Organization of Multiple Sclerosis Nurses explains:

“The advice I give about preparing for a doctor’s appointment is to think about your goals for the visit and consider that your healthcare provider may have different goals. For example, you may want to talk about your top three most bothersome symptoms, and your provider may need to talk about labs…or other tests that you need. I usually tell patients to have a list of questions that they want to ask or topics that they want to discuss. I also tell them to come prepared to take notes…and to ask for what you need, including written instructions or what to follow up on in the office.”

Preparing for your next doctor’s appointment:

To avoid feeling anxious, overwhelmed or worried about doctor appointments I created a list of reminders I use so I will be fully prepared for my next visit:

  • Organize your medical history by having copies of medical records, x-rays, scans or other lab tests and the names/phone numbers of previous doctors. You can have these sent directly to your doctor from your previous doctor (you will first need to sign a consent form) either before your appointment or bring them with you.
  • Keep a journal of your symptoms. It does’t need to be elaborate, just a word or two to help you remember.
  • Bring a list of questions with you. I keep a piece of paper on my nightstand to write down questions and concerns I have. Do not leave your appointment until everything on your list is addressed.
  • Ask a family member or friend to come with you to help explain your symptoms, or to be a good listener and take notes.
  • Be specific about your symptoms, how they affect you and when they happen.
  • Bring a list of any medications and supplements you are taking including dosage and inform the doctor of any allergic reactions to medications.
  • Request a brief verbal summary and follow-up instructions to review what was discussed. If you’re nervous or need extra time to process information this review can be particularly helpful.

Remember that you and your doctor are managing your health as a team. The more prepared you are for your appointment the stronger your team will be!

How do you prepare for a doctor’s appointment? Anything you’d add to Cathy’s list? Join PatientsLikeMe to chime in and get more tips from the community.

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted 8 months ago by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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