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Why can’t some MS docs communicate with their patients?

[This first appeared as my column in www.multiplesclerosisnewstoday.com]

Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.”

These posts jumped out at me:

So when my neuro says he wants me to start physical therapy, does that mean I’m going to hear a call from them or does that mean I’m supposed to go out and find my own? Just asking cause it was a week or so ago when he said this. Confused.

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My son starts (Lemtrada) infusions Monday. Can you guys give me an idea of what we’ll need to take with him to the infusion center? And what we’ll need to have ready at the hotel? Feeling anxious.

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I go for five days of (Lemtrada) infusions next week I’m terrified… Can someone help me with what to expect or if I need to prep or anything of that sort? Thank you.

What’s the problem?

How can it be that patients are left dangling in the wind like this? Why is it so hard for some of our doctors to communicate with us? Or is it, in fact, the “us” that’s having a hard time communicating with our doctors?

I just can’t fathom the question about physical therapy. How can any doctor suggest that a patient begin PT, but not provide a referral? (And, where it’s required, write a prescription) This isn’t something that should be left to a patient to figure out.

Regarding Lemtrada, I regularly see complaints from patients about a lack of information in advance of their first series of infusions. It seems that many neurologists are unfamiliar with Lemtrada protocols and leave it up to the infusion center to brief the patient. Yet, it also seems that not all infusion centers are knowledgable about Lemtrada. Lemtrada is a complicated drug, and its protocol requires patients to obtain and take several other drugs before, during and following the infusions.

The drug’s manufacturer, Genzyme, provides a “One to One” support program for patients but, from my personal experience, it seems a bit overwhelmed. For example, my pre-infusion information “kit” didn’t arrive until a week after my infusions had ended. Fortunately, my own neurologist was great about providing information before, during and after my treatment.

It’s a two-way street

But, here’s something important. Information flow is not just the doctor’s responsibility. We, as patients, have a responsibility to ourselves to get the information we need. And that means being proactive about it and ready with questions before setting foot in the doctor’s office. The Agency for Health Research and Quality (the lead U.S. federal agency charged with improving the safety and quality of America’s healthcare system) has an excellent game-plan on its website to help you get the most from a visit with your doctor. It’s worth a look before your next appointment.

The American Cancer Society has an excellent guide about how patients can share the responsibility for good communications with their doctors. Though it’s focused on cancer patients, just substitute “multiple sclerosis” for “cancer” and almost all of its information is appropriate for us. It also is the only resource I’ve found that provides suggestions for how to raise the communications issue with a doctor who doesn’t communicate well. For example:

  • “I’m worried that we aren’t communicating well, and here’s why …”
  • “I need to be able to talk with you about _________, and I feel like I can’t. Can we discuss this?”
  • “I realize that you’re very busy, but I need to discuss _________ with you. Can we schedule a time to do that?”
  • “I’m having trouble understanding ___________. Can you help me?”

The bottom line is, don’t be shy. Be prepared. You’re your own best patient advocate.

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The music of MS

[This post first appeared as my column in http://www.multiplesclerosisnewstoday.com]

You may not have heard this song, but I bet its lyrics will strike a chord.

I cannot feel my body.
I cannot feel my face.
My legs are pins and needles
and my mind is a disgrace.
I see in double vision,
so there’s more of you to admire.
Got a freaky disposition
and my soul is on fire.

The title of the song is “Mrs. Hypochondriac,” but singer-songwriter Alu’s symptoms are far from imaginary. Alu, (pronounced AY-loo) has MS. As she explains on her website: “Prior to being diagnosed with Multiple Sclerosis, I had a lot of weird symptoms that doctors couldn’t explain. People often accused me of being a hypochondriac. It was a really difficult time.” She calls the song “a story of survival — surviving a brief tumultuous marriage, divorce, and MS diagnosis.”

Alu was diagnosed with MS in 2012. Not long after that she wrote another song with an MS connection, called “Marie.” It ends:

Oh, Marie.
Life is never what it seems.
You can plan and prepare
but please beware:
Life will humble you.
Life will humble you.
This life will humble you.

Alu isn’t the only performer singing about MS. On YouTube, “Irishbear76” takes a more direct approach:

Possibly the most unique song, and certainly the most positive one that I’ve discovered, was written and performed by Kristen King. “Impervious” tells the story of how stem cell therapy changed her life:

Have you put your MS experience to music? I’d love to hear it, if you’re willing to share. Just drop a link, below, in Comments.

Night Life

I rarely re-blog something but this post from Jen just struck a chord. My occasional, but recurring, dream is that I’m walking and suddenly realize that I don’t have my cane. Sometimes I care…sometimes I don’t.

Tripping Through Treacle

I often feel like I have another life…. one that I can only access when I am asleep.

Although I can sometimes feel frustrated about the amount of time that I spend in bed, it is needed for me to be able to function and feel vaguely human, as many who have chronic illnesses will understand.  But there is another aspect to sleep that I appreciate – the dreams.  And this is where my other life comes in.

In my dreams, I do not have multiple sclerosis.  I have my old life back, one without tiredness, mobility problems, a scooter.  In my dreams I walk.  And I walk and I walk.  Usually around cities.  Its almost like it is a subconscious thing – like my brain knows that I can’t walk well so it gives me every opportunity to do it when I am asleep.

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There is a quote from…

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MS and falling the best way

[This item first appeared as my column on http://www.multiplesclerosisnewstoday.com]

Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It all happens in about three seconds, and how I handle those three seconds will make a big difference in how soon I get up, or if I get up.

I learned how to fall when I took judo lessons as a kid. It’s the first thing you’re taught. Even when you land on a mat, when someone throws you over his shoulder you want to do all you can to try to spread the impact and land on a body part that’s soft, like your side.

Those basic lessons have served me well over the many years that I’ve been tripping over my multiple sclerosis. A recent article in the New York Times confirmed, and added to, the falling techniques that I learned as a kid. Physical therapists, stuntmen, martial arts instructors and paratroopers (all of whom know a good deal about falling) agree on a few things:

  • Protect your head
  • Stay loose and don’t fight the fall
  • Don’t stick your arms out
  • Try to land on your side

Says jiujitsu instructor Paul Schreiner in the Times article: “Accept that you’re falling and go with it, round your body, and don’t stiffen and distribute the energy so you take the fall in the widest area possible.”

The website wikihow.com has put together a well-done series of illustrations about falling properly. Obviously, these are general recommendations. One size doesn’t fit all, but the info should help you grasp the concept.

One trick I’ve learned is that I try to toss my cane away from me if I’m starting to fall. Doing this allows me to avoid falling on the hard metal of the cane. It also frees both of my arms to protect my head and makes it easier to try to fall onto my side.

Says physical therapist Jessica Schwartz, in the Times article, “It’s almost inevitable you are going to fall, so you really should know what to do.”

Do you? Do you have any “tricks” to pass along that might help others?

 

 

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Pills, shots or infusions for your MS?

[This first appeared as my column on http://www.multiplesclerosisnewstoday.com]

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher share of the market at the end of 2016 compared to 2015.  Tecfidera was at the top of the pills list with Aubagio gaining ground. But, final FDA approval of the infusion drug Ocrevus (ocrelizumab) could be a game-changer in the pill-shot-infusion decision.

Ocrevus

Neurologists and many MS patients are very familiar with Ocrevus. There’s a lot of chatter about it in online MS gathering spots, and many doctors report they intend to use it as soon as it is approved. And, even though most of the “buzz” is about prescribing Ocrevus for PPMS patients, it’s expected that a lot of doctors also are looking at it for those with RRMS. It could push ahead of other infusions, such as Tysabri and Lemtrada. as well as oral meds such as Tecfidera and Aubagio. Spherix reports more than one third of the neurologists it surveyed said they would have been likely to have started patients on Ocrevus, rather than on Tysabri, had it been available.

Weighing the treatment options

What drives these drug decisions? According to a Spherix report RealWorld Dynamix™: DMT New Starts in Multiple Sclerosis, the drivers include clinical considerations such as safety and efficacy, as well as non-clinical concerns including patient requests and the policies of the insurance coverage of those patients. Interestingly, it appears that neurologists are becoming more comfortable using high-efficacy DMTs right away for patients with aggressive MS, rather than working up to them from drugs with lower efficacy, but lower risk or cost.

Be involved in the decision

As the patient you should take an active role in your drug selection. A Spherix report released last fall showed that newly diagnosed MS patients are doing their research about DMTs. One in five of them are asking their neurologists about specific MS drugs. Those doctors say that 27% of their patients have a high degree of involvement in choosing the DMT they will use, 43% have moderate involvement, and 30% only low involvement. Unfortunately, more than 50% of the neurologists surveyed say that they, alone, choose the DMT the patient will use. About a third say they present a few choices, and then let the patient decide.  Only 10% of the docs say they present all of the options and then let the patient decide.

How did you decide which DMT to use? Are you thinking about changing?

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Have a say in what MS researchers research

Our friends at iConquorMS have a couple of new, quick on-line surveys available for MS patients to answer.  I’ll tell you about them in bit but first let me tell you about iConquorMS. (I first wrote about this groups a few weeks ago the column I write for http://www.multiplesclerosisnewstoday.com).

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background?

Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years from MS patients who’ve volunteered to fill-out online surveys. Though the group of patients is small, so far, their data is fascinating. For example, you can go to the iConquerMS.org website and register to see graphs outlining the ages, employment status and other demographic information about the unidentified volunteers. Or, you can see how they’ve answered questions about their social activities, sleep disturbances, mobility issues, and so on.

Patients get a say in the research

The goal of the project is to give people living with MS the ability to play an active role in research about the disease. This is done by giving them a way to securely provide health data for researchers to compare, to propose research topics that are important to the patients themselves and to become informed about the research process and specific studies. “Our ambitious agenda is nothing less than establishing a new model for research in multiple sclerosis,” says Robert McBurney, PhD, president and CEO of the Accelerated Cure Project for MS.

Using patients’ information to improve life with MS

Last August, iConquerMS launched its signature research project: REAL MS (Research Engagement About Life With MS). It’s a long-term study that will use the answers submitted via the online surveys to address things that impact the daily lives of MS patients. For example, information about which drugs and supplements work best for which people, which symptoms have the biggest impact on quality of life, or what people with MS can expect from making lifestyle changes.

REAL MS is modeled on the Framingham Heart Study, a community-based research study that has had a profound impact on the understanding of the causes of heart disease and how to treat and prevent it.

The project is supported by many top MS organizations, including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and Can Do MS.  “Understanding the MS experience from the patient’s perspective is vital to improving the care of people with MS and to creating effective treatment paradigms,” according to the National MS Society’s Timothy Coetzee, PhD, on the project’s website.

A few more volunteers would be nice

When the iConquerMS project began in early 2015 it was hoped that 20,000 MS patients would be recruited to contribute their health data and research ideas. Unfortunately, at the end of 2016 only about 3,100 volunteers have signed-up to participate in the database. I’m one of them.

The latest surveys

We are back today with two new requests from scientists collaborating with iConquerMS.  One research team is looking for input from people with progressive forms of MS and the other is seeking input from people who have been or are currently on Tysabri.  We want to make sure the design of these studies reflects the preferences and priorities of people with MS and are turning to you for input.

If you are diagnosed with a progressive form of MS:

Researchers at Stanford University, including a scientist who is also a member of iConquerMS, are writing a funding proposal for a study that could lead to less fatigue, pain and depression among people with MS.  Your answers to a few questions will help in the design of the study and the writing of the proposal.

If you are interested in assisting and you have a progressive form of MS, please go here and fill out the short survey.

If you have in the past or are currently taking natalizumab (Tysabri):

A team of neurologists from NYU is writing a funding proposal to study dosing patterns of Tysabri.  They have asked the iConquerMS community to assist by answering a short survey, which should take no more than 5 minutes to complete. The information you provide will help them better understand the current knowledge and practices of people who have been or are currently on Tysabri.

If you are interested in assisting and you have in the past or are currently taking Tysabri, please go here and fill out the short survey.

If you have any questions on either survey, contact us at info@iConquerMS.org.

 

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Lemtrada for my MS: Ups and downs

It’s been a month since I last posted here.  I’m sorry.  I’ve been spending my time riding a roller coaster.

It’s the roller coaster of reactions that I was told to expect following my Lemtrada infusions.  I managed to avoid most of those reactions for the first month and I thought that I was home free.  Ha!  What could I have been thinking?

Month-two began with a good lab report but also with an appearance of the fatigue roller coaster.  On several days it was very tough getting out of bed.  Other days I felt good when I woke up but took a dive in mid-afternoon and had to head back for a nap for a couple of hours.  Many nights involved multiple “pee” trips, which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s been an uncomfortable ride. One day I finally listened to my body and spent the whole day in bed.  It helped, but it didn’t stop the coaster.

I had a slow start today, but since I got going I’ve been feeling pretty good.  I even had a good physical therapy session in the afternoon and I’m still here, cranking at the keyboard, in early evening. But who knows what morning will bring.  The uncertainty of all this makes me wonder if I made the right decision, at age 68, to switch from Aubagio to Lemtrada.  My MS lesions have been stable for years. Though my mobility has slowly and steadily decreased, I was never really faced with the prospect of not being able to have a good idea of how much fuel would be in my tank to start each day.  But, I’m on the road now.  No U-turns on this one.

As many of you know, I write a column, twice a week, for www.multiplesclerosisnewstoday.com. That’s where I’ve been devoting most of the fuel that’s been in my tank recently.  Apologies for my absence.  Hopefully, the coaster will crawl to a stop soon.

Oh, by the way, the women in the picture on the top of this blog are two very important members of my Lemtrada team; Dr. Heidi Crayton and Carrie Blizard Potter, R.N. They warned me this would happen!