173 posts in the category “Parkinson’s Disease”

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

Posted January 3rd, 2018 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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Illustrating member perspectives on life with chronic illness

Posted November 17th, 2017 by

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge.

When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community.

Battling cluelessness and confusion

Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.”

Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He remodeled a bathroom, built a stone patio, removed an above-ground swimming pool and more. “I was just trying to figure out how not to take my anger out on others. That’s when I realized that PD may win the war, but I can fight the battles and do that to the best of my ability every day.”

How does Tommy describe life with Parkinson’s disease? Take a look…

Tommy has been a PatientsLikeMe member since 2007, and has been connecting with others like him for ten years. “I found a community of wonderful caring people. We were like a small rural community even though we were spread out across the world… This is an isolating disease that makes some people embarrassed about how their body moves, and reclusive, so I make sure to welcome new members.”

Knocking down barriers

Larry Tilson is a PatientsLikeMe member living with ALS. He shared his story with us by typing with his eyes using Eye Gaze technology. “My first sensation of not being able to move came in the winter of 2007, when I started having trouble buttoning a shirt and tying my shoes. It felt like something was restricting my movement.”

Gradually, Larry says the feeling progressed from his hands to his lower arms, then to his back and core muscles. “It feels like I am pushing through an ever-thickening invisible substance.”

Larry is in a different place now than the initial disbelief he felt when he was diagnosed. When he began to research he discovered other people living with ALS were living productive lives. “That’s when I decided to accept the fact that I have ALS and fight to stay productive. I don’t lie down. I try each day to find a way to enrich someone else’s life in some way.”

Take a look at how Larry describes life with his condition…

What’s Larry’s focus these days? “I try to knock down a barrier, help to change a rule, right a wrong, or contribute to science in some way like sharing my information on PatientsLikeMe. That is what makes me smile. To touch someone else’s life in a positive way, whether they know it or not.”

Interested in seeing the rest of this illustration series? Join the PatientsLikeMe community and view the rest of the images in the forum.

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