Columns

Living with MS: There’s a World Out There

One of the most dispiriting aspects of a chronic illness is that it traps you in your own world. Major events happen but these are filtered against the achievement of actually being able to get yourself to the bathroom. At the time of writing, we in the U.K.

CMSC Revises Recommendations for Gadolinium Use in MRIs

Editor’s note: Patient columnist Laura Kolaczkowski attended the 31st annual Consortium of Multiple Sclerosis Centers conference in New Orleans. The information in this article was taken from an interview session with the physicians.   The use of gadolinium, which is the contrast agent often used during MRIs for multiple…

The Importance of Cultivating Your Circle

Support is a crucial component in fighting chronic illness and adversity. Our humanity connects us and we thrive on relationships. Support may come in the form of family, friends, social services, groups and countless other methods. I have been fortunate to have an abundance of support for which…

Jumping to Conclusions About a MS Treatment

Those of us with multiple sclerosis are always on the alert for new treatments. So, when a common, inexpensive and easy-to-administer drug recently appeared on the radar as a possible MS treatment, it wasn’t surprising that dozens of social media folks jumped to relay word of it. Their…

Transitioning from MS Patient to Cancer Caregiver

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced  pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

One Man’s Playground is Another Man’s Horror

Multiple sclerosis has a way of messing with one’s head. Whether it’s emotional or psychiatric disorders, fatigue, brain fog, or physical problems, there’s a lot to wrestle with. And to effectively battle this disease requires you to be in a certain state of mind. Let me give…

Lemtrada II: My Right Foot (Hopefully)

Read John Connor’s previous column, “Lemtrada I: This Island Couch.” Apologies for the pic of my edema–riddled right foot. If I put whiskers on it, my big toe could do a damn fine impersonation of a seal. On the bright side, a month ago it was twice this…

An ‘MS House’ That Lets You Walk in My Shoes

(Photo by Andreea Antonovici) A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.

MS Burning Feet and Hands Could Be Erythromelalgia

Erythromelalgia is a rare and painful multiple sclerosis (MS) symptom that I (and others with MS) experience. Almost every night my feet have a tight, swollen feeling accompanied by a terribly hot, burning sensation. It is usually cool to the touch but can feel hot at certain…

‘Disabled? You Seem Perfectly Fine to Me!’

The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…

Lemtrada I: This Island Couch

The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…

Speak Up to Keep the Cost of MS from Costing You More

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

Would You Share Your Info with an MS App?

A smartphone app has been designed to collect lots of information related to your multiple sclerosis – things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…