223 posts in the category “Multiple Sclerosis”

Health news: What’s making headlines in June

Posted June 27th, 2018 by

In case you missed it, check out this round up of some of the stories making headlines in June…

 

Parkinson’s disease:
  • Apple Watch will now be able to monitor PD: Tech developers announced this month that the Apple Watch will now be able to track two common PD symptoms — tremors and dyskinesia — and map them out in graphs to help doctors (and patients) with PD monitoring. Fill me in.
  • Study points to an “overlooked driver” of PD — Bacteriophages: What are bacteriophages or “phages”? Viruses that infect bacteria. New research shows that people with PD may have an overabundance of phages that kill “good” bacteria in the microbiome or gut, which could mean a new target for treating PD. More on the study.
Lupus:
  • How common are cognitive issues with lupus? Very. A doctor specializing in lupus research says nearly 40% of people with SLE have some level of cognitive impairment, such as trouble with attention, recall and concentration — so doctors should monitor it early and often. Read his Q&A.
Lung cancer:
  • Drug may replace chemo as initial treatment for many with NSCLC: New clinical trial results of the immunotherapy drug Keytruda show that it can be a more effective first treatment than chemotherapy for many patients with advanced non-small cell lung cancer (NSCLC) — even those with low levels of the PD-L1 gene mutation. Tell me more.

 

MS:
  • VETS Act expands access to telehealth: Late last month, Congress passed the VETS Act, expanding access to telehealth for more than 20 million veterans, including 30,000 living with MS. Get the full story.
  • Now enrolling: Nationwide clinical trial: Researchers at John’s Hopkins University are seeking newly diagnosed or untreated patients living with relapsing-remitting MS (RRMS) to participate in a study to help inform treatment decisions. Learn more.

 

 

Mental Health:
  • Practices for overcoming trauma: Results from a new study found that women who combined meditation with aerobic exercise had far fewer trauma-related thoughts, and saw an uptick in feelings of self worth. Get the full story
  • When antidepressants won’t work: “I knew it wasn’t going to be a magical Cinderella transformation, but I definitely feel like a newer person.” Read one man’s experience with Transcranial Magnetic Stimulation (TMS) after first-line treatments didn’t work. More info.

 

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

Posted June 8th, 2018 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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