Sunday, January 29, 2017

What is Hyperosmia?

Walking into the kitchen, I stop to ask, “Who got bananas?” My husband replies, “We don’t have any bananas.” But I distinctly smell bananas and now I want one. “I did have some strawberry and banana yogurt earlier today," he says. "I washed out the container and it’s next to the sink." Aha. That’s what I smell.


Sometimes hyperosmia (an increased sense of smell) drives me batty. The smell might be something quite pleasant, like a banana, or something offensive, like my cat going to the bathroom at the other end of the house. Hyperosmia is one of those weird things I’ve learned to live with. It doesn’t affect me all of the time, but occasionally I seem to have the nose of a bloodhound.

An altered sense of smell can be related to multiple sclerosis (MS), neurologic disorders, or other causes. It’s not something that my neurologist routinely questions me about, but it is something you should mention to your doctor if you experience it.

The incidence of impaired sense of smell in people with MS is variable, with estimates ranging from 15 percent to 38.5 percent in different trials. A recent systematic review of the literature found prevalence reports ranging from 20 percent to 45 percent of the MS population. Discrepancies among research results may be due to different testing methods, small numbers of people in the trials, and differences in trial designs.

Read this post in its entirety:
My MS and My Bloodhound Nose

Friday, January 27, 2017

How To Be Your Best Advocate

Build a coordinated health care team

MS is a disease that can directly or indirectly affect almost any area of the body connected through the central nervous system. Your basic health care team will include your primary care physician, specialty doctors (including your neurologist), an MS-certified nurse, and a physical therapist, as well as your caregivers, partner, and/or loved ones.


You should expect members of your health care team to communicate with each other and share relevant information with each other to provide you with the best comprehensive care. This will reduce the chance of conflicting plans of care or over- or under-utilization of resources. During consultations, it’s important that your providers are open to multi-sided discussions where you are encouraged to express personal preferences and they present informed clinical options.

Neurologists and MS nurses who attend annual medical conferences focused on multiple sclerosis, such as CMSC or ECTRIMS, are more likely to be up to date on recent knowledge related to MS. Don’t hesitate to ask your providers how they remain informed as to the latest research and treatment guidelines. By working together you can establish a treatment path guided by clear goals.

Read this post in its entirety:
How To Be Your Own Best Advocate

Wednesday, January 25, 2017

MS Advocacy At The State Capitol


The Virginia chapter of the National Multiple Sclerosis Society (NMMS), of which I am a member, led the way for state advocacy across the country in support of policies that will benefit people living with multiple sclerosis (MS) and other chronic diseases, caregivers and their loved ones, and people who don’t have anyone else to speak up on their behalf.

Becoming an advocate is really easy, and you can take action from home by becoming an MS Activist and signing up for federal action alerts from the National MS Society. But there is something special about traveling to your state capitol, visiting the offices of your state legislatures, speaking your concerns, making your voice heard, and witnessing the legislative process in action if you are fortunate enough to sit in on a meeting of your state congress.

Read this post in its entirety:
Speaking with Your State Legislators about MS: State Action Day in Virginia

Wednesday, January 18, 2017

Building A Strong Health Care Team

Building a strong health care team begins with YOU as you recruit team members with the skills and expertise to function in a coordinated way to provide you with the best care. As you work in active partnership with your team members — doctors, nurses, therapists, pharmacists, and office staff — it will become easier to identify quality care and to be empowered to communicate your needs, questions, concerns, and personal choices.


Primary care team

As a person living with multiple sclerosis (MS), it’s often easy to think of your neurologist as your primary, or most important, physician. However, you continue to need access to a primary care physician (PCP) who can take a big picture view of your health, while being available for urgent, acute, and chronic needs. For example, you would call your PCP if you suspected a urinary tract infection so that you could be quickly tested and prescribed treatment. Or if you have chronic conditions, such as hypothyroidism or high cholesterol, it is your PCP who monitors your health with routine laboratory testing and prescribes medication to treatment the condition.

Read this post in its entirety:
Building Your Best MS Health Care Team

Monday, January 9, 2017

Brrrrr - Cold Temperatures and MS


The start of a New Year is often a bright moment — a chance to look ahead and make grand resolutions and promises to ourselves for the months to come. For me, the new year brings excitement that days will continue to lengthen as the sun sets one minute later each evening. However, the temperatures will also continue to drop and it’s about to feel like winter very soon.

While some people with multiple sclerosis (MS) are heat intolerant and have trouble during the summer, others are sensitive to cold temperatures. Some people, like myself, may be bothered by both extremes as it can become difficult to regulate body temperature due to impaired neural control of autonomic and endocrine functions. The part of the brain that senses core body temperature and regulates it to about 98.6°F can be affected by MS, allowing for atypical fluctuations in body temperature.

Read this post in its entirety:
A Wintery Mix: The Effect of Cold Temperatures on MS Symptoms