Category Archives: Multiple Sclerosis News Columns

She Has MS and She’s Hiking 500 miles

April Hester has MS. She was diagnosed in 1996, just after she turned 20 years old. Like many of us, April has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot.

But unlike many of us, April and her husband Bernie are in the middle of a walk. More accurately, it’s a hike — a 500-mile hike, from Walhalla in the mountains of South Carolina to Awendaw on the coast, along the state’s Palmetto Trail.

Bernie and April Hester on the trail. (Courtesy of Bernie Hester)

As you can imagine, it’s not going to be easy. April is using “trekking” poles for the entire hike, even when the trail goes through the downtown sections of some towns. She’s be wearing ankle braces. But, as Bernie Hester told me in an email, “Her big problem is balance, she falls a lot and I mean a lot. Most of the time after the first 3 miles her legs get weak and her right foot experiences foot drop. We also have to break a lot so she can keep going. Then sometimes she can just go, we had a day where she had some issues early then caught her second wind and we did 22 miles, I was the one holding us up!”

The two expect that the toughest parts of the hike will be the beginning and the end. The start of the trail has a lot of hills and valleys, with rugged terrain on the trail sections and a lack of re-supply options. The end is a remote section over 50 miles long, through a national forest. Again, few resources will be available, no re-supply areas are around, and it has a lot of swamps.

Packed and ready to go. (Courtesy of Bernie Hester)

Believe it or not, this couple has hiked this trail before. They did a similar hike this year, from February through April. Back then, they spent only a few nights in tents and a lot of nights in hotel rooms. They also skipped some highways that span some gaps in the trail. This time will be different, and more difficult. As Bernie explains on the couple’s Trail Journals website, “we will get dropped off this Sunday morning with what’s on our backs and other than the caches & care packages we are on our own for the next 500 plus miles to the coast.”

Bernie and April say they’re making this hike to raise awareness about the fight against MS. They’re also hoping to raise money for the National MS Society… $100,000, in fact. (You can donate here.)

The hike began on Sunday, Oct. 1 and as of Oct 16 they were about 200 miles into it. Bernie and April expect the full hike to last 35 or 40 days. You can follow the pair at the Trail Journals website or on Instagram.

(This is an updated version of a post that first appeared as my column on www.multiplesclerosisnewstoday.com)

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Walk-testing the New Bioness L300 Go

I’ve been using a Bioness L300 for just over five years to counter my foot drop. Without the L300 strapped to my left leg, it’s difficult for me to walk more than 25 or 30 steps, even with two canes.

The L300 is a functional electronic stimulator (FES). Each time I start to lift my left leg to walk, it sends a low-intensity electrical pulse down a nerve that runs from my knee to my ankle. That pulse forces my foot to flex upward from my ankle so that my toes don’t drag. The electrical pulse replaces the signal that my brain should be sending to the nerve that my MS has blocked, and it counters my foot drop.

About six months ago, L300 manufacturer Bioness received the OK from the U.S. Food and Drug Administration to market a new model of the L300, the L300 Go. A few days ago, I had an opportunity to “test-walk” the Go, and here’s what I found.

No foot sensor neededL300 Go

The biggest and best difference is that the L300 Go doesn’t require you to use a foot sensor in the heel of your shoe. In the original L300, the sensor is used to detect your motion as you begin to walk. It sends a Bluetooth-like signal to the cuff on your leg, telling it that you’re trying to move. The cuff then generates the pulse that stimulates the nerve in your leg and helps you to lift your foot.

That means that anytime you change shoes, you need to move the sensor to the pair that you’re going to wear. Not only is that a nuisance, there can be a lack of consistency in where you place the sensor in the shoe. Also, because insoles are different, there can be the same inconsistency in the amount of heel pressure that’s required to trigger and to end the pulse.

Naturally, you can’t use the original L300 if you’re barefoot.

3-D motion detection

Without a foot sensor, the L300 Go’s cuff detects the start of your leg motion. This is similar to the process used by the WalkAide, a competitor of the L300. Unlike the WalkAide, the L300 Go has a 3-D-motion-detection system. Not only does it detect the forward and backward motion of your leg, it also detects sideways movement and leg rotation. This allows a physical therapist to adjust the unit more precisely to make it more responsive to each patient’s unique gait. To provide this three-way detection the Go contains four electrodes, compared with the original unit’s two.

No control unit

The original L300 requires you to carry a small control unit, which you use to turn the device on and off, put it into “test mode,” and also to adjust the intensity of its pulse. With the Go, this is all done on the side of the cuff. (If you really want a foot sensor or a control unit, Bioness will sell you one. But why would you want one?)

The test walk

The Go looks and feels like the original L300. Maybe I walked a little faster with it. Maybe it triggered a little quicker. I don’t think that it allowed me to walk any further than normal. On the other hand, it was certainly nice to be able to sit in a chair without having to turn off the unit so that it wouldn’t trigger when I released the pressure on a heel sensor. Unfortunately, I forgot to test the Go walking up and down stairs. My guess, however, is that it would work better than the original unit because its trigger mechanism isn’t dependent upon heel pressure.

What’s it going to cost?

The Bioness rep told me that the Go will cost the same as the current L300. That’s about $6,200. I was also told that there would be a discount if current users wanted to upgrade, but she couldn’t say how much it would be.

Don’t count on insurance picking up the cost. Bioness apparently has had greater success recently getting insurance to pay for the L300 than when I got mine in the fall of 2012. But, it’s a fight and a lot of really good documentation is necessary. The same goes for Medicare and Medicaid. Again, don’t hold your breath waiting.

Do I plan to upgrade?

Nope, not at that price. Even with a discount, the benefit that I’d receive probably wouldn’t be enough to justify the cost of the upgrade, at least not now.

Bioness tells me that it intends to support the original L300 units for “at least the next three years.” So, I guess if my unit breaks down in 2020 or later, I may have to go for the Go.

If the L300 Go is right for you, however, Bioness expects to begin shipping it in October to patients whose doctors have given them a written order.

(This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com).

When Do MS Symptoms Become a Relapse?

Am I having an MS relapse?

I saw that question asked the other day on one of the social sites I follow. At first, I thought, “Gee, doesn’t everyone with MS know when they’re having a relapse?” Then I realized that for several years after I was diagnosed, I was never sure if what was happening to me was technically a relapse and worth a call to the doctor. I’d wind up in the hospital being treated for a relapse, but only after my wife would spot a symptom getting worse and tell me that I needed to see my neurologist. It rarely dawned on me that what was happening was what we used to call an “exacerbation.” But I always walked better after getting treated with a course of steroids.

There’s a guide that can helpMSAA-Relapse-Tool-Kit

So, how can you know that you’re having a relapse? There’s now a really useful booklet that can help. It’s called, appropriately, the “MS Relapse Toolkit,” and it’s just been published by the Multiple Sclerosis Association of America. The booklet can be read online, downloaded as a PDF file, or ordered as a hard copy at the MSAA website. Here’s a thumbnail of what’s in it:

What’s a relapse?

  • Existing symptoms have worsened temporarily or recurred, or …
  • New symptoms have appeared
  • The symptoms have lasted for at least one or two days with no sign of a fever or infection (e.g. a UTI)
  • Tests show your myelin or nerves have been damaged or inflamed

When to call your neurologist?

The MSAA booklet, written by Aaron Boster, MD, and Jacqueline A. Nicholas, MD, MPH, suggests you call your doctor if:

  • The new or recurring symptom(s) has been present for at least 24 to 48 hours, or …
  • It’s been less than 24 hours, but your symptoms are severe and could affect your health or safety

As long as…

  • You don’t have a fever or any other signs of infection
  • Your body isn’t overheated, which might have resulted from the temperature around you, exercise, etc.
  • You didn’t overexert yourself
  • You aren’t having an unusually stressful day

The idea seems to be that the trigger for your problem should be medical and not the result of some external stimulus.

What else is in the Relapse Toolkit?

The booklet has another half-dozen chapters that include a list of questions to ask your neurologist about relapses, some handy, fill-in-the-blank forms for contact information and the drugs that you use, what to tell your doctor when you call, details of various treatment options, and some really useful ideas about planning, at home and at work, for a possible relapse. It even includes a crossword puzzle that uses relapse-related words.

The price is right

Did I mention that the “MS Relapse Toolkit” is free? As we used to say when I was growing up in New York City: “Such a deal!”

(This post first appeared on www.multiplesclerosisnewstoday.com)

Is Medical Marijuana Right for My MS?

The state where I live has legalized medical marijuana (MMJ) and it’s getting ready to open state-licensed marijuana dispensaries. So, I’ve been thinking about using MMJ to treat some of my MS symptoms.

How can MMJ help MS patients?

A 2012 study by researchers at the University of Plymouth in the U.K. reported improvement in the muscle spasms and pain of MS patients. There have been other reports of reduced bladder urgency, faster and better sleep, improved vision, and fewer abdominal problems.

As I’ve considered marijuana, I’ve discovered there are a lot of choices to make and some things that I should know before I’d feel comfortable using MMJ for my MS.

For example, I wanted to know the difference between cannabidiol (CBD) and tetrahydrocannabinol (THC). Both are cannabinoids, compounds that are found in the marijuana (cannabis) plant. And the balance between the two has a major impact on the effect of the marijuana.

What are CBD and THC?

THC is the main active ingredient in cannabis. It’s the part of the plant that provides the “high.” According to the National Institute on Drug Abuse (NIDA), “THC can increase appetite and reduce nausea. THC may also decrease pain, inflammation (swelling and redness), and muscle control problems.” And, there can be a wide range of THC potency between cannabis strains.

CBD doesn’t give you a “high.” In fact, scientists report that CBD has anti-anxiety effects and lessens the intensity of the “high” produced by THC. According to NIDA, CBD “may be useful in reducing pain and inflammation, controlling epileptic seizures, and possibly even treating mental illness and addictions.” It’s said that it promotes calmness without causing you to feel unusual.

The website “Learn About Marijuana,” published by the Alcohol and Drug Abuse Institute at the University of Washington, is a great source of more information about this.

What strain should I use?

There are a lot of marijuana “strains” with all sorts of colorful names like “Blackberry Rhino” and “Girl Scout Cookies.” Many are available for sale in the dispensaries that states have set up to sell medical marijuana products.

On the various MS social media sites, people have lots of favorites. One friend even keeps a list of ratings for those that she’s sampled.

MMJ scorecard

 

An article on the www.leafly.com website tells the story of how one MS patient uses different strains and different ways of consuming it, depending on the time of day.

“In the evening, he enjoys an indica-infused brownie to help him sleep. During the day, he’ll add a high-CBD infused butter to his omelet or vaporize strains that alleviate fatigue and give him energy.”

Balancing CBD and THC

The difference between strains is due mostly to the ratio between CBD and THC, but how do you determine what that ratio is, or should be, for what you need? The website Green Rush Daily has tried to help with that decision by creating a “10 best” list of marijuana strains for several diseases, including multiple sclerosis. Leafly.com actually rates strains and, like Yelp, offers customer reviews. I can’t vouch for any of this information, but it’s good to look at it just to help you understand how different strains of marijuana may affect you.

One other suggestion: Several of the MMJ users I’ve contacted suggest asking the “budtender” at the dispensary where you buy your MMJ which strain would best serve your needs. Just like asking a sommelier to suggest a wine, I guess.

(This post first appeared as my column on Multiple Sclerosis News Today website).

Have You Been Switched from Generic to Brand Name?

 

Insurance companies want people to use generics, rather than the more expensive brand-name drugs, right?

Maybe not. Because, at least in some cases, they’re doing just the opposite. Some patients are being forced to use brand-name drugs even when those drugs have generic equivalents. It happened to my wife last week. Not surprisingly, that means that some of us with MS could wind up having to dig deeper into our pockets to pay for some therapies.

The New York Times recently published a long story about this relatively recent, and not widely known, practice. It points a finger at both insurance companies and drug manufacturers.

Here’s what’s happening

The Times story reports that some drug manufacturers are trying to fight competition from generic versions of their products by negotiating deals with insurers and pharmacy benefit managers. (Pharmacy benefit managers are companies such as CVS Caremark and Humana that actually run the drug plans provided by Medicare and private insurance companies.)

The deals require the drug plans to stop covering some generics and instead approve only their brand-name equivalents. In exchange, the drug companies sell the brand-names to the drug plans at a discount. But, the Times reports, the discount isn’t passed along to patients. The insurers or the drug plans pocket it and patients wind up paying more for these drugs.

The impact on MS drugs

This practice also is reported to be happening with some biosimilar products that compete with the new, expensive biologic drugs, just as generics compete with brand names. (A biosimilar is a product that is almost identical to an FDA-approved biologic drug. It’s supposed to have no significant differences in terms of safety and effectiveness, and there are only small differences in its components.)

A drug called Glatopa is a biosimilar for the daily MS injectable drug Copaxone. Two years ago, Glatopa’s manufacturer predicted that Glatopa would have a wholesale list price of about $63,000 a year. That’s about 15-18% lower than the list price for once-a-day Copaxone.

According to the Times, in December, CVS Caremark, one of the largest drug benefit managers, sent a memo to pharmacies telling them that some of its Medicare drug plans would cover only brand-name versions of 12 drugs. No more coverage for their generic versions. Copaxone was one of those 12.

Out-of-pocket costs are impacted by deductibles

A spokeswoman for CVS Caremark told the newspaper that consumers never pay more for a drug when Caremark favors a brand name over a generic. But it’s not simply a case of the cost of each prescription.

According to the story, 29% of Americans with employer-provided health insurance have a high-deductible plan. They would still be hit with higher out-of-pocket drug costs if they were forced to use generic drugs because, until their deductible is met, they’re often required to pick up the full price of brand-name medications. On the other hand, they’re charged only a small percentage of the price of generics before meeting the deductible.

Also, many plans pay for a larger percent of the cost of a generic drug than they pay for its brand name.

The bottom line

Pennsylvania pharmacist Robert Frankil, quoted by the Times, said, “There’s only one reason why they’re requiring you to use a more expensive product. Because somewhere down the road, somebody is earning more money.”

Frankly, I don’t know what we patients can do about all this. But I thought you’d want to know about it.

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

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)