Monthly Archives: November 2016

A Letter to a Scared Young Woman

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

Dear Lauren Parrott,

I know you’re scared.  The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new MS medicine.

I’ve been there.

I’ve gone through three major multiple sclerosis drugs over the 35+ years that I’ve been fighting MS.  I was a subject in the clinical trial of Avonex; in other words, a guinea pig for a brand new drug.   Was I nervous?  You bet! But my neurologist, who sounds like your Dr. Rossman, was someone who I trusted. So, I went onto that drug for several years and it helped.  My reward was worth my risk.

Then I moved to Tysabri and finally to Aubagio.  As you know, Tysabri is a drug with the a very serious potential side effect; the sometimes fatal brain disease Progressive Multifocal Leukoencephalopathy, or PML.  But both it and Aubagio have helped slow the progression of my MS.  Again, the reward was worth the risk.

In December I’m going to switch drugs again.  I’ll be starting Lemtrada. I don’t think that I’ve ever been “scared” about any of my drug therapies but, for some reason, I am a little nervous about this one. Maybe that’s because some of the people using Lemtrada have reported some very uncomfortable side effects, and I’m a wimp when I don’t feel well.  But, I’m determined not to allow my nerves to prevent me from taking advantage this drug.  The potential reward, that some of my MS symptoms might be reversed, seems far greater than the risk that’s involved.

My neurologist has told me “the buzz is good” about your new drug, ocrelizumab.  The investing web site Motley Fool calls it “the revolutionary Multiple Sclerosis drug you’ve never heard of.”  Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive, as well as relapsing-remitting, MS.

I’m sure that Dr. Rossman wouldn’t have recommended ocrelizumab if he didn’t think that the drug was right for you. Even though he’s no longer able to be at your side through this trip you can count on other MS patients, like me, to walk down that road with you.  We’ll try our best to help you through the risks that scare you so that you have a chance to reap the rewards.chronic_illness_bloggers_logo_300x250

 

Fatigue

Are You Ready for Bed at Noon?

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

I thought that I’d finish writing this last night, but I was too tired.

Same thing the night before…and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates that about 80 percent of the people who have MS have fatigue as one of their symptoms. (Only 80 percent?  The other 20 percent must be faking alertness).

I use the drug Provigil (Modafinil) to improve my alertness. I like to swim in the summer and do some strength exercises in the winter.  And that helps. But is there something we’re overlooking?  Something like another illness on top of our MS.

Is it a Sleep Disorder?

A 2014 study in the Journal of Clinical Sleep Medicine indicates we may be closing our eyes (sorry, I couldn’t resist that) to the fact that actual sleep disorders, such as narcolepsy or sleep apnia, are disrupting our sleep and causing some, or most, of the fatigue that we attribute to MS.

Researchers at the University of California, Davis and Boston University studied a group of MS patients who said they had excessive daytime sleepiness (based on the Epworth Sleepiness Scale) or an abnormal level of fatigue (based on the Fatigue Severity Scale).  Of that group, 38 percent screened positive for obstructive sleep apnea, 32 percent for moderate to severe insomnia and 37 for restless legs syndrome. Yet, only between 4 and 12 percent of that group reported that they had been diagnosed for those illnesses.

This seems to be more evidence that something known as “diagnostic neglect,” which I wrote about several weeks ago, is going on.  Many of our doctors seem to have tunnel-vision when it comes to the possibility that a problem other than MS may be causing one of our MS symptoms.  Even my neurologist, who I love, has never suggested that I be tested for an illness such as sleep apnea.  I’m up twice, sometimes three times, a night and we’ve always attributed that to bladder problems.  Maybe it’s something else.  I plan on asking her about this on my next visit.  If you’re tired much of the time, maybe you should have the same conversation with your doc.

Before You See the Doc…

Before you have that chat, there’s a good overview about MS and sleep problems on the web site of the National Multiple Sclerosis Society.  Taking the time to give it a read will give you a good foundation for that talk.

 

 

 

“Bracing” Yourself for MS

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

One of the MS blogs that I follow is written by Jen, who lives in England.  It’s called Tripping Through Treacle.  (Treacle is a thick, molassas-like, syrup). Doesn’t that neatly sum up the lives of many of us in just three, alliterative, words?  From MS newbies to old timers like me, we worry (or have worried) about tripping.  Many of us try to do something about that, however, and one of the options is to wear a brace.

AFOs

The formal name for these uncomfortable looking things is Ankle-Foot Orthosis, or AFOs.  Jamie, who writes the Multiple Experiences blog, is trying an AFO right now to help with her foot drop, which is what trips up many of us.  Well, she’s sort of using one. Jamie has told her blog followers that she “hates” the brace.  She finds it inconvenient to use, especially because you need to take off your shoe, slip the AFO into that shoe strap it onto your shin, and put your shoe back on when you want to walk with it.  This can be particularly cumbersome if you need it on your right leg, the leg that you use when you’re driving.  Jamie says she’d rather use her walker but she plans to give the AFO another try in a couple of weeks with help from a physical therapist.

Working with a PT or, better yet, an orthotist is important.  An orthotist is a specialist in making and fitting orthosis.  After getting a prescription the orthotist will measure your leg and foot and the AFO is then custom-made from those measurements.  Then the orthotist fits, tests and adjusts it before sending you back out into the world to walk with it.

afos

Cheryl’s AFO collection

An AFO is typically made from metal or plastic but some are made of strong, but lightweight, carbon fiber.  Cheryl Hille, an MS patient who runs marathons and about whom I wrote several weeks ago, has half a dozen custom-made AFOs to use in various situations.  I used an AFO a few years ago for a short period of time, (though I wasn’t running any marathons), until I “upgraded” to a Bioness L300 device.

FES Units

The Bioness L300 uses a cuff that straps to your leg under the knee cap.  A pad in the heal of your shoe senses when you begin to try to raise your foot.  It then sends a programmed, l300low-level electrical stimulation that activate the nerves and muscles that raise your toes and lift the foot. (The process is known as Functional Electrical Stimulation, or FES). You’ll need a prescription for the L300 and a Bioness approved therapist will need to fit you and adjust the unit.

I’ve used an L300 for about five years.  At first, it worked so well that I was able to walk a city block without tiring, something that I hadn’t been able to do previously.  With my cane I even walked up a grass covered hill, which was amazing.  Alas, I don’t walk as well, over all, as I did five years ago and I’m now using two canes.  I can’t do that hill anymore but without the Bioness strapped to my leg I wouldn’t be able to walk more than about 50 feet. I really depend upon it. The L300 can also be put into a “test” mode, which will trigger the stimulus while you’re sitting in a chair, so that you can exercise that leg muscle even when you’re not walking.

A similar unit is made by WalkAide.  Unlike the Bioness unit’s sensor the WalkAide cuff, itself, senses your movement, so you don’t have to wear a shoe.  I tried a WalkAide, briefly, when I was trying the L300 but I didn’t feel as stable with it as I did with the Bioness unit.  Remember, both with AFOs and these FES units, each MS patient is probably going to have a different user experience.  I’d recommend taking each device for a test walk, or two, before you buy.

Naturally, none of these devices are inexpensive.  I think my custom-made carbon AFO cost about $800, which included the services of the orthotist.  The L300 was selling for about $5,000 five or six years ago, but I was able to get a slightly used one for around $3,000.  Insurance covered most of my AFO but it didn’t cover any of my FES.  (That’s a rant for a future column).

If you’d like more information about all kinds of mobility devices, checkout the (U.S.) National MS Society’s web site.