Monthly Archives: July 2017

If My MRI is Stable, Why is My Walking Getting Worse?

During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?”

Interestingly, within a few days of my exam, a Harvard Med School study was released that addressed a similar question: Is there always a link between the level of physical disability in some MS patients and the amount of lesions in the brain?

What my doctor said

My neurologist’s answer was pretty simple. Disease progression in parts of the body that are controlled by nerves along the spinal cord, such as the legs, is usually noticed by a patient physically before the progression can be seen on a spinal MRI. On the other hand, MS disease progression can be spotted on an MRI of the brain before it’s noticed physically. So, by regularly doing brain scans, a neurologist may be able to halt that progression by changing DMDs, for example, before it has a chance to have a physical impact. Doing a spinal scan doesn’t present the same opportunity.

The Harvard Med School study

Details of the Harvard Medical School study are reported in an article written for Multiple Sclerosis News Today. The conclusion of this study is that, for some MS patients, there may be no connection between the number and size of the lesions that can be seen on an MRI of the brain and that patient’s level of physical disability.

The research found that a little over 13 percent of the patients who were studied had this “dissociation” between what the scan revealed and their disability level. Some had only a few brain lesions but lots of disability. Others had a lot of brain lesions but relatively little physical disability.

According to the researchers, patients in the low brain lesion but high disability group were prone to having a progressive form of MS, more cervical spinal cord lesions, and a lower physical quality of life. The study’s authors believe this may be due to their lesions being concentrated in the spinal cord rather than in the brain, and that’s pretty much what my neuro told me about my MS.

What about MS patients with the opposite — when their MRIs show a lot of brain lesions but they exhibit few physical symptoms? The Harvard researchers suspect these patients may be likely to have cognitive problems.

Bottom line

For the study: The researchers believe that this disparity between observable symptoms and MRI results complicates a neurologist’s ability to determine a prognosis for MRI patients.

For me: The study results, combined with what my neurologist told me the other day, explain why being told for many years that “the MRI looks great” was only half of my MS story.

(This post first appeared as my column on www.multiplesclerosisnewstoday.com)

The Ogo: 21st Century Wheels for Your MS, but with a Hefty Price Tag

About a year ago, I first wrote about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either. Just bend in the direction that you want to travel, like riding on a Segway, and off you go. It could be great for someone with MS.

The Ogo is the brainchild of Kevin Halsall and Marcus Thompson. Kevin is a product design engineer and Marcus is a paraplegic. Several years ago, Kevin began trying to develop a device that would increase Marcus’ mobility. With help from Marcus, a prototype was produced. Three major design changes followed.

The Ogo is ready to roll

Now, after a lot of tweaking, the Ogo production line is ready to roll late this summer. The Ogo looks great. It seems as if it could be really useful to any of us who use a scooter to get around, and it sure looks like a whole lot of fun. But it comes with a hefty price tag of just under $17,000. (And that’s without including the cost of shipping from New Zealand, customs fees and, possibly, import tariffs and sales taxes.)

I haven’t tried it myself, and I’m not getting anything from the Ogo folks for writing about their device, but I do want to show it to you.

Take a look:

Here are some specs for the Ogo:

  • Length with footrest up: 770 mm / 30.3 inches
  • Height with backrest on: 1 m / 39.4 inches
  • Height with backrest off: 610 mm / 24 inches
  • Width: 630 mm / 25.2 inches. All terrain kit: 830 mm / 32.7 inches
  • Battery x 2: Lithium Ion
  • Battery x 2 weight: 11kg / 24 lbs
  • Travel distance: Up to 38 km / 24.8 miles on a single charge.
  • Weight: 65 kg / 143 lbs
  • Speed: 20 kph / 12 mph

If your MS means you need to use a mobility scooter, you think the Ogo is for you and you have $17,000+ that you can spare, ordering information is on their website.

(A version of this post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

Ocrevus, Hope and a Suicide Postponed

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay.

Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years.

Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he changed his mind.

Campbell has been writing about his MS for the Sunday Herald in Glasgow since late April. (He’s also the paper’s “Beer of the Week” writer.) He describes himself as “a man on death row,” and on May 20, his MS article began, “Well, unfortunately I am still alive.”

Campbell has mobility problems, and living in a second-floor flat has been tough for him. He says he’s had no support in getting ground-floor accommodations. He complains that he was recently discharged from a hospital without the possibility of receiving home care. He has no caregivers and exists on microwave dinners.

Campbell had hoped that a stem cell transplant would allow him to live a life that was worth living, but his neurologist told him that he thought HSCT would be too risky. So, at age 56, Campbell made plans to die.

Then came a glimmer of hope. In a column he wrote two days after he had been planning to die, Campbell explained that a former police sergeant named Rona Tynan gave him a reason to live, at least a little while longer.

“Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed,” Campbell wrote.

That treatment is the disease-modifying drug ocrelizumab, sold in the U.S. under the brand name Ocrevus. The U.S. Food and Drug Administration approved it a few months ago, and it’s the only drug approved to treat progressive MS. Some neurologists refer to it as “stem-cell lite” because of the way it attacks the rogue B-cells that are believed to cause MS. Ocrelizumab is expected to be available in Scotland later this year.

“For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting risk-free treatment for multiple sclerosis sufferers within the next few years,” Campbell writes. “The timing could not have been more perfect — although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.”

Colin Campbell’s hope, now, is that Ocrevus will halt the progression of his MS and avoid a future that he pictures as becoming bedridden, needing help to eat and bathe, and using a catheter. He’s not sure how much hope he realistically should have, but he ends his June 17 column with: “Wish me well.”

That, we certainly do.

****

(This post first appeared as my regular column on www.multiplesclerosisnewstoday.com)

My Lemtrada Journey: 6 month report

It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?”

The answer: I’m not sure.

For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly, but steadily, declined.

So, I’m really not sure how much of an impact any of the disease-modifying drugs that I’ve been on since 1996, including Lemtrada, have had on my MS. I like to think that all of the shots, pills, and infusions that I’ve been treated with over the past two decades have, at least, slowed the progression of my disease, but it’s really hard to know for sure.

Enter Lemtrada

As you probably know, Lemtrada is designed to halt further progression of MS. In addition, some patients have had some symptoms reversed. But that benefit wasn’t expected, it just sort of appeared during the clinical trials. On the other hand, more than a few patients are reporting a variety of negative symptoms following their infusions.

My 6-month timeline

The first three months post-infusion were a real roller coaster. The lowest point on the ride was at about two months post-infusion, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days, I was much better.

Around the five-month point, my wife thought I was walking better. Today, just past six months, I think I am — sometimes, but not always. I also can flex my left foot up from the ankle just a little, and I think that’s new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been significantly reduced. So, all positive stuff.

But, on the other side of the coin, I developed an aching pain in both hips around mid-February. At times, that pain would shoot down one or both legs when I put weight on them. It’s been worse in the mornings, particularly if I’m trying to get up from squatting down. But, is this drug-related, or is it something else? My neuro says it’s not related to the infusions. Some Lemtrada patients have suggested that it’s the feeling of my body “making new bone marrow.” I just don’t know.

This pain has slowly eased since it began four months ago. That improvement may be related to receiving physical therapy treatments in April and May and getting back into the swimming pool in June. That physical therapy and the swimming may also be responsible for the mobility improvements that I mentioned earlier. Or is it the Lemtrada? Or, maybe it’s a combination of both.

The six-month mark is the time at which, I’ve been told, the ups and downs tend to level out or to swing upward. That seems to be the case with me. So, I guess it really doesn’t matter whether it’s Lemtrada, or PT, or swimming that seems to be helping, or if it’s the drug or the natural course of my MS that’s responsible for my low points. I’ll continue doing what I’m doing and hope for the best.

(A version of this first appeared as my column on www.multiplesclerosisnewstoday.com)

 

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