The MS Wire

My Lemtrada Journey: Round 2 Plus 18 Months

Posted on November 11, 2019November 10, 2019

It’s time for another update on how I’ve been doing with my Lemtrada journey. The headline is I’m doing well. Lemtrada (alemtuzumab) is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves three daily infusions, given a year later. The medication has shown some success in slowing or halting MS disease progression in many, and has…Continue Reading

How Old is Too Old for Aggressive MS Treatment?

Posted on November 4, 2019November 3, 2019

A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger. The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease, was recently reported in a 76-year-old MS patient. According to the blog, citing Roche Pharmaceuticals, the man has had MS a long…Continue Reading

A Symbol to Reveal My Invisible Disability

Posted on October 29, 2019October 28, 2019

Don’t tell me how good I look … even if I do look good. Invisible Disabilities Week took place earlier this month. And, as people with MS know very well, multiple sclerosis can be as invisible as Casper the Ghost. An invisible disability isn’t limited to people with MS, but we have to be close to the top of the list of people who are told they look good when…Continue Reading

No, it’s Not All in Your Head

Posted on October 21, 2019October 26, 2019

If a doctor has ever told you “it’s all in your head” this will resonate with you. A neurologist at the Harvard Medical School named Matthew Burke has written an article titled “It’s All in Your Head” for the well-read Journal of the American Medical Association. According to Dr. Burke, the problem of physicians telling patients that unexplainable symptoms are all in their head has become a silent epidemic, “slowly…Continue Reading

Shoes Make a Difference Walking with MS

Posted on October 15, 2019October 14, 2019

Shoes make a difference for soneone with MS

The other night I had an MS dream. In it I was able to lift my left leg as well as I can my right one, regardless of my weak hip flexor. I don’t usually know what’s triggered a dream, but this time I did: My Bioness L300 had quit working. (For those unfamiliar with the L300, it’s a functional electronic stimulator that triggers a nerve in my leg and…Continue Reading

Overdosing on Vitamin D Supplements? It’s possible.

Posted on October 7, 2019October 6, 2019

Many people with multiple sclerosis use vitamin D supplements. I’ve been popping a 2,000 IU tablet of vitamin D3 each morning for many years. And with good reason. Studies show that having an adequate blood level of vitamin D may lower a person’s risk of developing MS. Research also indicates the vitamin may reduce the severity of MS symptoms and lengthen the time that it takes to move from relapsing…Continue Reading

Flu Shots and Vaccines: Neuros Say Benefits Outweigh Risks

Posted on October 1, 2019September 30, 2019

New vaccine guidelines from neurlogists' association

This is the time of year when my wife and I start thinking about getting our flu shots. We’ve already had the pneumonia and the older shingles vaccine and hope to soon update with the new shingles vaccine, Shingrix (recombinant zoster vaccine). These vaccines are OK with my neurologist and my primary care doctor. They’re also OK with the American Academy of Neurology. The academy has updated its vaccine guidelines…Continue Reading

Doors Shut on Stem Cell Program That Treated Semla Blair

Posted on September 24, 2019September 23, 2019

Richard Burt, MD, the chief of Northwestern Medicine’s immunotherapy for autoimmune diseases division, is taking a sabbatical, and the stem cell program he has headed for many years is shutting down. The clinic treated several people with MS, including actress Selma Blair. A group of 110 MS patients were involved in Burt’s phase 3 clinical trial of hematopoietic stem cell transplantation (HSCT), running from Sept. 20, 2005 to July 7,…Continue Reading

“Smoldering” Lesions May be Red Flag for Aggressive MS

Posted on September 16, 2019September 15, 2019

Brain lesions, seen on super-strong MRI images as having rings, may indicate that someone’s multiple sclerosis will be aggressive. Researchers call these lesions “smoldering.”

Walking is Easy When I’m Dreaming

Posted on September 9, 2019September 8, 2019

When asleep, many people dream they can fly. Some dream about being naked in public, failing an exam, or (gasp!) about sex. The other night I dreamed that I was walking. I have that walking dream a couple of times a year. I’m walking along and all of a sudden I realize that I’ve left my two canes behind. My short dream a few nights ago, however, was better than…Continue Reading

"People newly diagnosed with MS will truly benefit from this book, while those of us who’ve lived with MS for a while will wish we’d had it ourselves!…Neurologists should consider keeping a copy of this book in their waiting room because their patients are going to need it." - Tamara K. Sellman, reviewing for Multiple Sclerosis.net.

The Multiple Sclerosis Toolbox is designed for MS "newbies" but it's great info for everyone. I combine more than 40 years of living with MS with some easy to understand info about diagnosis, treatments, visiting the neuro, relationships, mobility aids, travel and more…a lot of what you get in this blog. A paperback and an e-book are available on Amazon.