Tuesday, March 31, 2009

FDA Issues Refuse to File Letter on Fampridine-SR

News Release:

Acorda Therapeutics Receives Refuse to File Letter from FDA on Fampridine-SR NDA

--Company to Host Conference Call at 8:30 a.m. Eastern Time Today--

HAWTHORNE, N.Y.--(BUSINESS WIRE)--Mar. 31, 2009-- Acorda Therapeutics, Inc. (Nasdaq: ACOR) announced today that the Company received a refuse to file letter from the U.S. Food and Drug Administration (FDA) regarding its New Drug Application (NDA) for Fampridine-SR, a novel therapy being developed to improve walking ability in people with multiple sclerosis (MS).

The FDA has raised what it termed “format issues” regarding the eCTD (electronic) submission, requesting that some of the data in the NDA be reformatted, as well as requesting that some additional supporting information be included in the filing. The FDA has not requested or recommended additional clinical or other studies.

“We are surprised by this development,” stated Ron Cohen, M.D., President and CEO of Acorda Therapeutics, “We plan to address the issues raised in this letter with FDA expeditiously as we believe Fampridine-SR is potentially an important, first in class treatment option for people suffering with MS.”

The Company plans to request a meeting with FDA as soon as possible to discuss its comments on the NDA filing.

Conference Call and Audiocast

Acorda will host a conference call Tuesday, March 31, 2009 at 8:30 a.m. Eastern Time. To participate, please dial 866-783-2143 (domestic) or 857-350-1602 (international) and reference the access code 85118409. To access the audio webcast, please go to the Investor Relations "Calendar of Events" section of the Acorda website at www.acorda.com, or you may use the link: http://phx.corporate-ir.net/phoenix.zhtml?p=irol-eventDetails&c=194451&eventID=2150210.

A replay of the call will be available from 11:30 a.m. Eastern Time on March 31, 2009 until April 30, 2009. To access the replay, please dial 888-286-8010 (domestic) or 617-801-6888 (international) and reference the access code 59152215. The archived teleconference will be available for 30 days in the Investor Relations section of the Acorda website at http://phoenix.corporate-ir.net/phoenix.zhtml?c=194451&p=irol-irhome.

About Acorda Therapeutics

Acorda Therapeutics is a biotechnology company developing therapies for spinal cord injury, multiple sclerosis and related nervous system disorders. The Company's marketed products include Zanaflex Capsules® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company's pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.

Forward-Looking Statement

This press release includes forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. All statements, other than statements of historical facts, regarding management's expectations, beliefs, goals, plans or prospects should be considered forward-looking. These statements are subject to risks and uncertainties that could cause actual results to differ materially, including delays in obtaining or failure to obtain FDA approval of Fampridine-SR, the risk of unfavorable results from future studies of Fampridine-SR, Acorda Therapeutics' ability to successfully market and sell Fampridine-SR, if approved, and Zanaflex Capsules, competition, failure to protect its intellectual property or to defend against the intellectual property claims of others, the ability to obtain additional financing to support Acorda Therapeutics' operations, and unfavorable results from its preclinical programs. These and other risks are described in greater detail in Acorda Therapeutics' filings with the Securities and Exchange Commission. Acorda Therapeutics may not actually achieve the goals or plans described in its forward-looking statements, and investors should not place undue reliance on these statements. Acorda Therapeutics disclaims any intent or obligation to update any forward-looking statements as a result of developments occurring after the date of this press release.

Source: Acorda Therapeutics, Inc.

Acorda Therapeutics
Jeff Macdonald, 914-347-4300 ext. 232


Amy of Multiple Sclerosis: A Life of Learning is involved in this collaboration. Before I take the time to check out the new offerings and report back to you, just thought that I'd let readers know about their main website. This is an email I received this morning:

Hello Lisa,

My name is Ellen Kampel – I work for Microsoft and am a person living with multiple sclerosis (MS). I am reaching out to you on behalf of a great program in which I’m involved: The MS Technology Collaborative. The Collaborative is a partnership between the National MS Society, Microsoft and Bayer HealthCare Pharmaceuticals, dedicated to connecting people living with MS to technologies that can help them overcome MS-related challenges and live better.

The goal of the Collaborative is to provide technology solutions for people living with MS, many of which are affordable or even free. Our Web site, www.MyMSMyWay.com, offers an online interactive tool called “Snapshot” that prompts users to answer a series of questions, after which they receive a customized report with technology solutions specific to each person and his or her particular challenges. We also offer technology tips submitted by members of the MS community, a monthly column that I write with a leading accessible technology expert, and information on the types of technology available.

Because Brass and Ivory and Multiple Sclerosis Central engage such a large audience of individuals living with MS, I thought that your readers could find value in knowing about this program. I know so many people that rely on your blog and I hope that both you and your readers will find this information as helpful as I do.

Lastly, I wanted to share with you a bit of a preview about our newest and most exciting initiative – we’re in the process of building a free online game that addresses the cognitive challenges of people living with MS. The game will provide cognitive exercises that target some of the main cognitive challenges faced by the MS community. It’s being developed in consultation with individuals living with MS as well as medical experts who specialize in researching and treating this condition.

I’d love to have you be involved in our efforts. Would you be interested in seeing a preview of our game and providing the initial round of input from the MS community? It would be great to have you on board and get your feedback on our work.

Please let me know if you have any questions about this effort or are interested in becoming more involved. I look forward to hearing from you!

Ellen Kampel

Sunday, March 29, 2009

My Experience With Baclofen

Early in my MS career, I told the neurologist that I was experiencing unusual tightness in my calves. His recommendations were yoga, swimming, plenty of fluids and potassium-rich foods. These strategies helped somewhat, but not completely, and I certainly didn’t know how to properly stretch my muscles.

At home, I would talk about how knotted my calves were and the response I received was something like this: “Good grief, Lisa!! What did you do?” My response: “Absolutely nothing, and this is not as bad as it usually gets.”

So it wasn’t until the enormous, never-ending (seemingly) relapse I experienced last winter/spring that the neurologist and I discussed spasticity. Basically, the back of my legs were pulled so tight that I couldn’t extend them to stand straight. It was excruciating.

Also, I couldn’t stand from a chair or the sofa without pulling on a table. On Day 3 of a 5-day course of IV Solumedrol, I actually could stand up from a seated position. The moment was thrilling!!

A month later the spasticity was returning and my neurologist prescribed Oral baclofen (Linosenil®). Following the titration schedule described below, I found a therapeutic level. At first I did experience increased fatigue as a side effect, but that dissipated after 3-5 days. I was so nice when my legs could be completely straightened and I could walk more easily. The increased mobility was most welcome.

Rest this post in its entirety:

Taking Baclofen and Stretching for MS-Related Spasticity

Saturday, March 28, 2009

New Blogs and Websites


TheMSBlog.com has a slogan MS Understood: The website about MS that doesn't suck. This is a new website/blog written by two 20-something MSers. Check it out.

Shift.ms is a community for people affected by Multiple Sclerosis. We recognize that one size doesn't fit all, so our aim is to provide MS’ers with a platform to share their experiences with others in similar situations to help you to grips with MS.

Online & Over 50 and Living with Multiple Sclerosis by Mary Anne

When I started this blog with a different title, I did not know that I have Multiple Sclerosis. I took a long break from blogging because I was so sick (and misdiagnosed). I still think there is room for the over 50 crowd to learn what the young folks know about making money online and now much I can share about living with the ups and downs of this strange illness while finding my way to work online.

Friday, March 27, 2009

Why Am I So Angry?

Have you ever been someplace where you were there, but not really?

I used to do that a lot. When our family would get together with all of the aunts, uncles, and cousins at my grandmother’s house, I never really wanted to go. I would be the only female grandchild present and I would have loved nothing more than to stay home with a book or my piano to play.

I loved it when the family was out of the house and I was alone. During my junior high school years, I would raise the lid on our upright Baldwin piano, perch my book of Beethoven Sonatas inside, and play as hard and loud as I wanted until my heart had been appeased. That’s how I released the anger and frustration in my life....through my hands.

I was also terribly shy and didn’t want to have to talk to people. Just let me sit in a chair in the living while the “boys” were all outside playing and the “girls” were in the kitchen preparing the food. Neither place nor role felt comfortable, except for the world of my book. Fortunately, my mother recognized my need. I was allowed to read, as long as I were in attendance.

Since then, I have learned from my aunt Nancy that she (and others presumably) saw me as being pretentious and believing myself to be better than “them.” Sure, I didn’t speak with the typical Oklahoma twang. I didn’t so much appreciate the finer points of a gathering of women which reached beyond serving the “boys.” In actuality, I was extremely shy and experienced a bit of social anxiety.

So what does this have to do with being someplace, but not?

Very recently, I’ve received some emails from a few readers who are wondering how I HAVE BEEN DOING? [Linda, you’re not the only one to have noted my silence of late.] Imagine. People actually see me as a person who exists beyond this blog. Thank you.

Do I really have a voice any longer?

If you’ve visited the blog, you may have noticed the widget in my sidebar which leads to pieces I’ve written for TheHealthCentralNetwork’s Multiple Sclerosis Central website. Yes, I write for them as an independent contractor, making me a freelance writer.

You may have noticed that most of the posts recently have been of the technical nature, not so much personal. Although I do try to include a personal tidbit or two buried inside. Well, my assignments have been technical in nature this month. So that’s what you’ve seen.

One of the other writers said to me earlier this year that I needed to change my online behavior because I “represent” Health Central out in the blogosphere. Srsly? Except for a very few occasions in a comment at new blog (which was extremely awkward to do), I do not go around saying, “look at me, I write at HC. Come read all my stuff.”

So what do I do? I just put it out there.

If you choose to go read and comment, great!! If you read there and comment here, great!! (...although my producer will never know how much attention “I” bring to them.)

Ok. What about the title of this post? - Why Am I So Angry?

I have been frustrated with what I see going on in our MS Blogging Community. Rather than using a blog and comments to share ideas, express ourselves, and provide information and support, there are some who are exploiting the commercial aspect.

There is one such gentleman who will not promote anything unless there is something in it for himself. I listed his site in the appropriate spots within my pages and even made an adjustment as requested. (No, I’m not going to say who this individual is.) He once “borrowed” a list of links which took me hours to compile as a resource. But when he starts to “promote” shared resources now, where is my mention? Nope, not there. Well, maybe I do need a nifty graphic or logo.

This same individual (guy #1) is now promoting guy #2 who has a distinct financial motive on his blog (one which benefits his “guru” directly). How familiar is guy #1 with guy #2’s blog? Has he perused the content, ads or links? Maybe not.

Well, guy #2 in poor taste made the move to quote a portion of a comment I left at a dear friend’s blog. When trying to clear up any confusion, I left a comment on the post which was later deleted. So I left the very same comment again, also deleted. Hey, if you can’t allow contrary views to exist on your blog (as long as they are not rude or derogatory), then perhaps a blog platform is not the appropriate medium for you.

Then there is a new persona who has hit the world of Twitter and Facebook who wants to help folks achieve a platform of wellness. She has come on very strong in a promotional manner, complete with shiny website, videos, and webcast. She was looking for people on Linked-In who expressed an interest in multiple sclerosis. Upon finding me, she requested I join her network and then suggested that I contact her if I had any questions about my MS diagnosis and what it means for me. Okaaaaaay?

So everywhere I turn, it seems, I am bombarded with personas who reek of insincerity in our online MS Community. That makes me sad and angry.

As a result, I have been sitting quietly trying not to stick my foot in my mouth (which I most certainly have done with this post). I have been reading my book (the blogs) and listening to the discussions, but not putting myself into the mix.

Hey, Linda, Kelley, Jen, et al. I still haven’t shed much light on what is really going on in my world. LOL. Perhaps I’ll have to ease back into viewing myself as a real person instead of an online persona - Health Central Writer, Carnival Glue, and Welcomer of New Blogs.

Thursday, March 26, 2009

Carnival of MS Bloggers #32 - Montel Edition

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Reflection, Suffocation, and Montel

Happy 1st MS-iversary to me!
from Tingly Feeling

This post could also be titled, “How Old is This Mascara?” Because I was buying mascara when I got the phone call from my neurologist about the results for my second MRI.

That wasn’t the diagnosis phone call, though. That was the, “It’s either bad news, really bad news, or inoperable-tumor-on-your-spine news” phone call. Not the kind of call you want to get in the Nordstrom cosmetics department. So I took it outside to the sidewalk.

The bad option was Transverse Myelitis, a virus that could possibly have gone away, and the really bad option was MS. I still didn’t believe it was MS. I was crossing my fingers that it was this crazy virus, which still sounded pretty scary. But then again, I said to the doctor, my sister has MS and it doesn’t seem like the end of the world….

“You don’t want to have MS,” he said.

After we hung up, I went back inside the store and bought my mascara. (The sales girl was really nice; she later sent me a thank-you card for buying the mascara, with something cute written about how my lashes would be the envy of all my friends.) I left the store and called my best friend while standing on the sky bridge above 6th Avenue, watching the traffic pass below.

I started experiencing symptoms in fall 2007, when I was in physical therapy for an injured knee, which then aggravated “nerve damage” in my right leg, supposedly caused by an old ankle sprain (I am accident prone). But then the PT started to make my left leg go numb, so the therapist sent me to a neurologist.

The third MRI happened on Friday, March 26, 2008. The doctor called with the results that same night so I wouldn’t have to wait out the weekend: about 20 inactive lesions on my brain. “I hate having to give news like this,” he kept saying. Boo fucking hoo, I kept thinking. This is your job. He’s not my neurologist anymore.

Many doctor visits, three MRIs and one very surreal year later, here I am. My symptoms from the original exacerbation have never completely gone away. It’s crazy to remember a time not so long ago when I wasn’t aware every day that I have Multiple Sclerosis. That reality has been supplanted by this one.

Anyway, it’s time to throw out that mascara. It’s waaay past its shelf life.

The Face of MS? by Nina
Well, in case you missed it. Montel was on Oprah today. He was crying his eyes out. I can’t believe all the tears that went on. He clearly is deeply impacted by MS. He says that his shot everyday is just more reminders that he has MS. A sad depressed reminder. Anyway, one and one he went. The tears kept flowing. He was depressing me!

And I can not identify with him at all. When he called himself the face of MS, I laughed. Not my MS! Maybe its someone elses MS. Is he your face of MS?

by Kelley

I wanted to write this earlier, but I decided to wait until I had cooled off a bit. I was quite disappointed with the misinformation passed on during this show. I hope some of you brothers and sisters will join me in writing to Oprah to express our disappointment. That is, if you agree with my take on the show.

Although Montel's crying was touching and perhaps pulled at some heartstrings, somehow it felt very hollow to me. I felt his main purpose on Oprah was to sell his book. Which is fine. But do not try to sit there as if you are the spokesperson for everyone with MS. You do not speak for me! And you definitely do not speak for me if you are feeding the public incorrect information.

Case in point, Montel stated that there are 1.5 million people in America with MS who each suffer differently with the disease. Yes, everyone suffers different symptoms, but 1.5 million people? According to the National MS Society website:
In the United States today, there are approximately 400,000 people with multiple sclerosis (MS)—with 200 more people diagnosed every week. Worldwide, MS is thought to affect more than 2.5 million people.
Granted, these numbers are not the most reliable. There is legislation in the works to remedy this. However, I believe 1.5 million is a bit of an overestimate. OK, so the number of people in the U.S. with MS is questionable, but why am I so aggrevated? Read on.
Dr. Oz says suffocation caused by chest hugs is the leading cause of death for people with MS. Another leading cause? Suicide.
Excuse me? Suffocation?! Where did they get that figure? It is my understanding that only those with extremely advanced cases of MS die because the diaphragm does not cooperate. Way to scare the crap out of anyone watching who has been recently diagnosed! Oprah herself even said that Montel was battling a "life-threatening" illness. Uh, no. MS is not life-threatening. It is a chronic illness that must be managed, not beaten. At least that is what I need to believe right now to keep living. I was so outraged by the above statement that I had to do some research on my own. I feel vindicated, because I found that:
Very rarely [emphasis mine], there is a rapidly progressive course leading to death. MS itself is almost never the cause of death [again, emphasis mine]; death results from accompanying complications or infections. Generally speaking, the life expectancy of those with MS is at least 75 percent of normal. (from Life With MS)
Also, in the Journal of Neurology, Neurosurgery, and PsychiatryI found a study regarding survival and cause of death for MS patients. I could not get access to the entire article (I'm cheap), but the abstract had the following information:
Median observed survival time was 38.0 years from symptom onset. Mean age at death was 65.3 for women and 65.2 years for men. Mean age at death in patients dying from MS-related causes was 62.5 and 69.3 years (p<0.001) p =" 0.01).">
I believe I am correct in assuming that yes, MS does shorten your life expectancy somewhat, but you are just as likely to die of heart attack, cancer, stroke, getting hit by a bus, as you are of dying from MS complications.

I only wish Oprah had an MS specialist or someone from the National MS Society on the show to educate the public on the real facts about MS. I also wish that the audience had seen other facets of MS, not just Montel's experience. The public should see a normal person with normal income trying to live with the disease. We don't have gyms in our homes or personal trainers. Many cannot afford the disease-modifying drugs that Montel feels are a "reminder" that he has a chronic disease. That "reminder" is a lifeline for me.

Is some MS education, even incorrect, better than none at all? Please post your thoughts.


by Joy
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.

After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.

My Mom called me today to tell that Oprah was having a special episode with none other than Mr. Montel Williams and his amazing incurable disease. I am sure my interest in Montel is evident as you tune into my blog here, however, Montel aside, I have a bit of a rule in my house, there are a bunch of rules in my house, but one of the most sacrosanct is: No Oprah.

I really can’t stand this lady. She seems to have all the answers. The words that slip from her perfectly botoxed lips, the gestures that issue from her well manicured hands, the opinions that inform every cloistered plebian in the lower 48 is enough to make this bald guy grow some hair. I wouldn’t be surprised to find out she is only a step away from being canonized by the Pope. I would imagine she wouldn’t be surprised either. I just find it hard to believe that a multi-billionaire knows how I should live. Yeah, I got your favorite things right here lady. No one mouth should have that much power. She all but bankrupted the meat industry. To be fair, though, I’m not sure she realized that her voice was that influential at the time. Yet I still hold a “beef” with her because of what I call the “Tom Cruise Incident”.

Anyway, today I had to lift the ban. God I wished I hadn’t. I tuned in just in time to see Montel in tears, which was a regular occurrence throughout the hour long love fest. However, these tears were not for the incurable disease coursing through his body or the unstoppable pain he has in his legs. No these tears were for her Highness Oprah herself. I suppose at some point in his career, Montel, was compared to the big O and he needed to thank her. It was all very touching, no vaulting from the couch, but touching nonetheless. The rest of the episode was taken up with Montel’s battle with depression, more tears, his work out routine, more tears, his love of fishing, more tears, oh and his new book. It was all a bit much.

Now please don’t think that I am coming down on the guy because he openly wept. There is nothing wrong with it, I am as guilty of it as anyone else. Sometimes things get a bit much and a guy has to let it out. The issue I had with the show was it all seemed staged for the cameras. If you ever saw Montel on his show he was famous for shedding a tear or two in response to the latest depravity he chose to parade on his stage. The tears, no matter how real, rang very hollow for me. I’m not sure what I had expected, there was little information for a person like myself, dealing with the inevitabilities of MS. The episode was far more for the average Oprah or Montel fan than for those of us out here fighting.

I often felt like I was watching the “Last Temptation of Montel”. When he choked up as he told Dr. Oz he takes 26 pills a day and an injection, “365 days a year.” I was very close to flipping the channel. Perhaps it is the fact that I, like so many of you, deal with all of these things everyday. We don’t have TV shows, we don’t get applause. We quietly live our lives, wishing, praying that whatever it is we have today is what we still have tomorrow. We all know how terrifying this disease is, and I am sure it is just as horrid for Mr. Williams. However he has been fortunate enough to have carved out a very lucrative living, and bravo to him, however, he will never know what it is like to truly worry, not only about your disease, but how the disease is going to deplete you’re your savings. Depression, paranoia, guilt, fear, nervousness, not only stem from MS, but every time the mail is delivered these feelings are compounded by envelopes from the health care companies.

I suppose all I am trying to say is that I am glad that Montel was able to go on Oprah today to speak about MS. Any awareness is a positive thing. Although I do wish that it was less about the trials and tribulations of Montel, and had been more informative about treatments or perhaps the future of treatment. At the very least the guy could have made the point that he couldn’t jump up and down on the couch because MS affects his legs and he would just fall off.

I'm Not Ashamed To Admit When I'm Wrong by Tracys Ramblings
Montel had a great opportunity to tell all of Oprah's viewers the hardships that we have to deal with on a day to day basis while living our lives with MS. Instead, he failed. He was there to sell his book afterall.

I thought Montel would shine a light on real life when you're living with MS. But, in the words of the ever wise Chowder, "I was wrong, I was horribly wrong!"

Montel Educates Oprah About MS by Diane J Standiford

Okay, Montel Williams our MS unofficial spokesperson was on Oprah today. I didn't want to watch, but a friend thought I should. Please, I want to like him, I really do, but I just can't. Before I tuned in I suspected he would have yet another book out, promising to inspire and enlighten those of us with MS---but, no, I would reserve such cynical judgements----what ho!? Sure enough, he was there to plug a book.

Oprah: "What scares you the most?"
Montel: "That I won't be able to walk."

Well, that was fair enough, at least he is not afraid of not being able to walk AND see. He is not afraid of not being able to pay all his health care bills or make his rent payment AND not be able to walk, see, AND have a sick spouse.

Now he says he is a changed man. You know, all those people who never appreciated the best things in life and now since they have MS--EUREKA---they love their kids more, respect their wives, enjoy a fresh breeze, etc.

He takes TWENTY-SEVEN "pills" for his MS...did he mean vitamins? Munchkin to Oz---what message about MS are you giving to people? What are these pills?? GIMME A BREAK.

Okay, Montel and I won't be dining together any time soon, but here is what really knocked my striped socks off----Oprah didn't know what MS really was. Okey dokey, where is all the MS Awareness money going? If O isn't aware of MS, then certainly Joe the one-day plumber hasn't gotten the memo.

And what is this about suffocation? Glad I taped it, Dr. Oz said the number one cause of death for people with MS was SUFFOCATION? Sufferin' succotash! What? How? Suicide? Seriously? Not heart or cancer? Talk about bomb dropping, from all the doctors I've seen since my DX in 1990 the word SUFFOCATION has NEVER been mentioned.

I truly respect the way Michael J. Fox has handled his disease and his goal of finding a cure and getting funding for research. When he speaks, he educates, and it is never all about him. Egads.

This concludes the 32nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 9, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 7, 2009.

Thank you.

Monday, March 23, 2009

Physical Therapy is Good for Overall Health

I am still enjoying physical therapy sessions. Today, I was road the bike for 13 minutes (5, rest, 5, rest, 3) surpassing 2.5 miles. Didn't even feel completely worn out by this and still had plenty of energy to do some strength training.

After finishing the weight machine circuit, we didn't work on any balance exercises, but Valerie (my PT) had a new challenge. She handed me a BMI meter and we determined my current status. Homework for the next three days is to make note of everything I eat (and when), as well as my physical activities. On Thursday, we will calculate the input/expenditure balance.

Valerie says that I've "turned a corner" and that I'm "not the same person who walked in here a few months ago." Our next step is to focus on overall health and wellness. Lowering that BMI, increasing cardio endurance, and protecting myself from developing other diseases.

Yikes, I think I've finally met my match and will be held accountable. I'm actually a bit nervous about it. Wish me luck.

Sunday, March 22, 2009

Welcome New MS Bloggers to the Community

Just My Thoughts: A Journey through Life with Multiple Sclerosis is written by Mis.

Well, here in Michigan spring has finally sprung. All the nasty snow mounds that look more like dirt from a long winter of road grime are finally gone, the winter jackets are left in the closet, and we've even opened the windows a few times. It's funny really. I look at this change in seasons, and I can't help but see paralells to my own life.

In so many ways, I feel like I'm in my 'spring' of this journey I'm on living with MS. This winter was really, really bad. And I'm not talking the frigid temps and snow, either. I'm talking about myself. After years of mystery illnesses, people even thinking I was a bit nuts, and finally being diagnosed with MS in October... I sunk. I didn't just sink a little and bob around, I mean I went down like the Titanic. I have spent the better part of the last 6 months in quite the depression, not to mention in a state of constant fear. Fear of the unknown, fear of my own body revolting against me, fear of losing all that I love and hold dear because of this nasty disease. Every morning, I'd wake up and do a sort of 'body inventory'. Can I see? Ok wiggle your toes... can I stand? How's the arm, think ya have any small motor skills today? Hmm... I think that's some nerve pain I'm already feeling in that damn right leg. Quick do math- what's 8+5? Is your brain foggy? Think ya can speak without sounding like an idiot?

This...was me. And of course, some part of my body inventory would always fail the test, and I'd curl right back up and think to myself "maybe tomorrow I'll feel normal". Guess what? This IS normal. The normal I once I knew so long ago simply doesn't exist anymore. It's gone. Buh-bye. I finally realized I am never, ever going to wake up and feel 'normal' by healthy standards again. This sunk me into an even deeper fear and depression. I thought my life was over.
Be sure to read the remainder of this post.

Aaron started the blog, What I Do For My Children, to share his approach to Multiple Sclerosis and the work he does for the benefit of my children

Advice for the newly diagnosed
I remember sitting in my car in 1996 crying. I had just walked out of the doctors office and he'd given me the news that I had MS. I'd asked him a few questions and then was strangely blank. He asked me if I had more questions, as I think he had a lot more he wanted to say to me, but I said "no, probably tomorrow I'll have a lot, but not right now." I walked out of his office and sat in my car for 10 minutes and cried.

I went home and called my best friend and told him the news. He asked if I'd had dinner, and when I said no, he told me he'd be by in a few minutes with some pizza. I called my parents and had a very short conversation with them. I told them the news, that my friend was coming over, and that we'd talk more tomorrow, but I just needed to digest the news on my own for a moment. I called my other best friend and he said he'd be by with some beer. I called my third best friend. He asked if I wanted pizza, then beer, and finally settled on bringing by some videos.

We watched comedies, talked, drank beer, ate, and laughed for a long time that night. It was just what I needed: to be reminded that even if I was sick with a disease about which none of us had the slightest understanding or knowledge, I was still loved. The next day, I started dealing with what had changed.

It took me awhile to realize it, but actually very little had changed for me. I was still having this strange problem with my eyes, only now it had a name. But other than that, things were not that different. The change was in those around me.
Be sure to read the complete post here.

Terri jumped into the blogging world at Sanity is Over-Rated.

This is my very first blog here. I found it quite by accident. I was reading a post in a forum I frequent and wanted to respond to a blog..I ask in advance that you be patient with anything that doesn't make sense. I have a lovely thing called *cog fog* which often times has me typing grammatically incorrect sentences. I apologize in advance. I am 49 years old and up until 2006 had a pretty normal life. In April 0f 2006 my world changed forever. I was diagnosed with MS.

I believe I had the nasty disease earlier though. I felt fine until about 2000, when I first moved to Pa. I started to feel very tired. I assumed it was because I was approaching 40, working full time with two children. I noticed when I went to the store that every time I would get anything from the bottom shelf I would get very dizzy upon getting up. Again I brushed it off. In 2004 my eyesight took a turn. The eye Doctor said I was getting older, sigh. I went from no glasses to bifocals. One day I woke up and my eyes were blood red. I scared one of my students who said, "Mrs. M your eyes are bleeding." That time the DR. said it was dry eye syndrome and that he suspected I had some immune issue. He wrote to my family physician but that was the end of it.

Then in early in 2006 I began to spill things a little bit more than usual. Since I have always been a bit of a klutz, I attributed it to that. March rolled around and I fell a few times. I never thought anything of it. Then one day I started walking into things on my left side. I woke up one morning and had no use of my hands. I tried to get up and could not. My whole left side had no feeling. I went to my pcp right away and he ordered an MRI. The next day he called and asked if my husband and I could come in asap. I knew this wasn't good news. He showed us the pictures of my brain and said it appeared I had a tumor in the right hemisphere of my brain. Of course it had to be in a place that was not easily reached, a *high price real estate area* as he called it. He scheduled me an appointment with a neurosurgeon for later that week. I never made it.

the next day I was home. I collapsed on the floor and laid there for hours until my husband made it home from work. I will spare you the details, but it was a rather unpleasant physical sight . John came home and took me to a hospital in Philadelphia. They admitted me and told me that they couldn't address the brain issue because I also had a problem with my heart. Apparently I had something called A-fib. I had no idea. I was in the hospital for 12 days. First in ICU, then in Cardiac care, and finally in Neurology. They moved me there after they did some procedure to re-boot my heart. I had tons of tests, including a biopsy of my brain. I was released on Mothers Day of 2006. After 6 weeks of being told that my results showed abnormalities they couldn't diagnose, they sent samples to other universities. Finally I was told that I did not have cancer, but I had a lesion of dmylination which was Multiple Sclerosis. It was pressing on the nerves which control my left side.

Now it is 2009. I am still mobile, but have lost 40% use of my left side. I try my best. Some days are harder than others. Everyone who has Multiple Sclerosis is different. For me, fatigue is a huge symptom. I wake up feeling like I have been up for 2 days. I walk with a bit of a limp and if you didn't know me you might think I have had a little too much to drink.

Most days I have aching in my legs. My sight has deteriorated a lot so I seldom drive at night, but I consider myself lucky because a lot of people with MS don't drive at all. I take a lot of medicine daily for all of this. My favorite is my daily ritual of Copaxone. It is a shot which I administer each night. Oh the lumps!

I 'm not sure what (if anything) I hope to accomplish with this blog. I figure even if one person gets a little better understanding of Multiple Sclerosis, than it's something. Thanks for taking the time to read this.

Saturday, March 21, 2009

Electronic Medical Records and the 2009 Stimulus Bill

I was contacted by representative of Medical Software Advice with information about the Stimulus Bill and the $19 billion to incentivize medical practices to adopt and implement Electronic Health Records (EHR).

"We expect many hospitals, ambulatory care centers and solo practices to take advantage of the subsidy and implement an EHR over the next few years. This is going to have a large impact on the health care industry and patient care."

In an accompanying post, they discuss the potential onslaught of EHR failures following the Stimulus Bill.
The EHR subsidy has absolutely stimulated demand for EHRs. But we're concerned that free EHR software won't lead to meaningful use. it comes down to this: when they get something for free, humans are less likely to value it. We are concerned about the "luddites" that fear technology and change.

Late adopter providers may jump on the subsidy, but will they:
  • take a leadership role in championing the technology?
  • adapt their workflows to best practices in the software?
  • pay for extra training for their staff and themselves?
Don't get us wrong; this is not a software problem. We are huge proponents of EHR technology. Software and the companies that develop it are not to blame. It's the late adopter mindset that concerns us. We have outlined our concerns, as well as five critical implementation best practices at:

Dr. Rob at Musings of a Distractible Mind writes on this very topic in "Doing It Right."
Electronic Medical Records are coming. The economic stimulus bill (furious spinning kittens notwithstanding) assured this.

There will be even more money for implementation. We look forward to our checks (and are not counting on them yet).

Now it is time for the flies to start gathering. Wherever there is lots of money, “experts” pop up and new products become available that hope to cash in. Doctors, who are never lauded for their business acumen, will be especially susceptible to hucksters pushing their wares. It seems from the outside to be an simple thing: put medical records on computers and watch the cash fly in.

Anyone who has implemented EMR, however, can attest that the use of the word “simple” is a dead giveaway that the person uttering the word in relation to EMR is either totally clueless or running a scam. It’s like saying “easy solution to the Mideast unrest,” “obvious way to bring world peace,” or “makes exercise easy and fun.”

Run away quickly when you hear this type of thing.

So how’s a doc to know who to trust? What product should he/she buy and whose advice about implementation should they follow? There are many resources out there. Here are a few I think are especially worthwhile:

  1. Buy a product that is certified by Certification Commission for Health Information Technology. CCHIT is a government task force established to set standards for EMR products. Its goal is to allow systems to communicate with each other and enable more interfaces in the future. The bonuses for docs on EMR are contingent on the system being CCHIT certified (think of it as something like the WiFi standard).
  2. The American Academy of Family Physicians’ Center for Health Information Technology and the American College of Physicians both have tools to help member physicians decide on an EMR. Your own specialty society may, too.
  3. Several professional IT organizations have programs to improve EMR adoption, including HIMSS and TEPR.
  4. Austin Merritt has written a good article of advice on his website Software Advice that underlines the importance of implementation.

The best advice I can give, however, is to visit a doctor’s office who is using an EMR successfully. This office should be as close in make-up to your office as is possible. You should be able to look at how they do it and see yourself in that situation. Never buy a product before visiting at least one office like this (no matter how good the sales pitch). When you visit, make sure you ask them about the implementation process. How did they do it and how hard was it?

Austin Merritt and the folks at Software Advice wish to spark a conversation on the topic. This will affect the office experience of patients. I have one doctor who uses EHR and has for many years, but my neurologist is very reluctant to the idea.

We'll see what happens in the coming years.

Friday, March 20, 2009

Helping to Make a Difference

My friend (who happens to have MS) is giving a leg-up to a future college student. You can help too!!!

My goal: to help a homeless young adult pay for the cost of an undergraduate education. from Chemo is Not a Pony by

ETA: - UPDATE #4 - As of 23:29 EST on 03/19, we are at $1,706.74 total. Go, speed racer, go!! We’re only around $275 short of the goal now. But stiLL NEEDS MOAR!1!!!!11!!!!!!!!

Her name is Raquel Harrison. She wants to study Psychology. She is 21 years old and has a 3.3 GPA.

I would like to help her pay for the cost of an undergraduate education, but I can’t do it alone:

The money will go into my Paypal account [go to original post for Paypal contribution], and I will gather it into one lump sum and send it as a check to this girl. She is at Covenant House in Newark, NJ. (I chose a young person from NJ because this is the state I was living in when my patron found me—the same patron without whom I would never have completed my undergraduate work, let alone gone on to complete a Master’s degree and now, very nearly, a Ph.D.).

If you don’t trust me with the money, you can also send it directly to the following address:

Raquel Harrison
C/O Covenant House
330 Washington Street
Newark, NJ 07102

(If you choose this option, please clearly indicate on your check or enclosed letter that the money is intended for “Raquel Harrison’s undergraduate education.”)

Contact at Covenant House: Francesca - Office: (973) 286 - 3408
Alternate Contact: Jeanette Scrozzo - Office: (973) 286 - 3544

You can also view the website for Covenant House here.

If you do donate, please indicate to me whether or not you would like the recipient of the money—Raquel Harrison—to know your name. If not, I will keep you anonymous. If 10 of you donate $100, that will make a total of $1,000.

If together you manage to total $1,000 for this girl, I will match it with a donation of $1,000 additional dollars from my own savings account. And even if you don’t manage to total $1,000 for this girl, I am giving her a grand of my own money anyway.

That’s 1-2 grand, maybe more…

It’s not even close to the cost of tuition, but it is a start. Covenant House will make sure the money goes directly to the educational institution of Raquel’s choice.

Thank you for your help.

Other Relevant Websites:
1. Do1Thing.Org.

Note: Xenu was one of the generous folks who contributed to the funds collected for
Herrad's cushion last fall. An uncommon graduate student indeed.

Thursday, March 19, 2009

I Chose Copaxone to Treat My MS

The decision to use or not use a disease-modifying treatment is a personal one between yourself, your family, and your doctor. Some patients decide to jump in and get started and others wait and see how their MS is going to progress.

When I finally received the official diagnosis in October 2005, I had already experienced years of symptoms (since 1993 at least), a documented clinically isolated syndrome (blinding case of optic neuritis in 2000), and relapses which were significantly impacting my ability to function. There was no question in my mind that I would do what I needed to do to fight this beast.

The question then became WHICH treatment to choose. I did not want to use any of the beta interferon drugs due to one significant side-effect which is depression. I already had a history of depression which goes back decades and didn’t want to have to fight that battle in addition to MS. So Copaxone was my ONLY choice. [Note: Tysabri was not yet back on the market.]

Copaxone is a daily medication, self-injected just under the skin into the fat tissue, but never the muscle (ouch). Injection site reactions are the most common side-effect. There is also the Immediate Post-Injection Reaction which about 10% of patients experience. I’ve heard this described as feeling “like having a heart attack.” Fortunately, I’ve not experienced this particular side-effect.

Read this post in its entirety:

Taking Copaxone to Treat My MS

Wednesday, March 18, 2009

Happy Birthday Little Guys!!

Today is the 1st birthday of my two little kittens, Musette and Pippin.

Here they were last May as new family members.

Here is a more recent photo.

They do engage in more activities besides sleeping, but this is the easiest time to attempt to snap a photo. Other times they are busy being rascals, playing chase, and feasting on some chow. One little rascal (Musette) likes to tip her water bowl just enough to spill a bit of water on which to take that bowl water-skating. Very entertaining.

Tuesday, March 17, 2009

Introducing Big Jen - A Head Above the Crowds

Jenny's Blog, A Head Above the Crowds, has a section devoted to MS and Life. Here is what Jenny has on her Home Page......

"Have a heart that never hardens, a temper that never tires and a touch that never hurts" - Charles Dickens

Hi, My name is Jenny Harrod and this is my "AutoBlography" No, I'm no-one special and my story is by no means unique. I'm not ever going to be famous or rich, nor a great explorer or inventor. I'm just another face in the crowd - my only outstanding feature being my height at six foot one and a half (or five foot thirteen and a half as I used to say with a smile to elderly patients)

I have not lived a particularly exciting life (yet!!) but if one person finds a little comfort or inspiration here then it has been worth it.

Enjoy your visit.

So please do go visit. If you have experience with thinning hair and hair loss due to being on Rebif or any other of the interferons, please share with Jenny what you did about it. Thanks.

Monday, March 16, 2009

Provigil and Me

In How to Manage of MS-Related Fatigue, pharmacological and non-pharmacological strategies to combat fatigue were discussed. MS fatigue is not the same as simply being tired, or muscles which are fatigued after a good work-out, or the desire to sleep in on a Saturday morning. MS fatigue can be debilitating and interfere with daily functioning.

Even before I was diagnosed with multiple sclerosis, I was T.I.R.E.D.!!!! After diagnosis it got worse, to the point where I needed to take 2-3 naps daily just to make it through. So I mentioned this to my neurologist who gave me some samples of a medication to try. Those samples were for Provigil, a prescription medication used to improve wakefulness in adults who experience excessive sleepiness due to one of the following diagnosed sleep disorders: obstructive sleep apnea, shift work sleep disorder, or narcolepsy.

Modafinil (Provigil / Cephalon, Inc.) is not approved for MS-fatigue but is commonly used off-label for that purpose. When I first tried it, the effect was not immediate. It’s not the type of medicine which guarantees that you are peppy in 30 minutes. However, I did start very conservatively by trying just half a 200mg tablet. After a few days I tried a full tablet and finally had a day where my brain felt “normal.” I could think clearly and only needed one nap. What a blessing!

Read this post in its entirety:

Taking Provigil for MS-Related Fatigue

Saturday, March 14, 2009

Management of MS-Related Fatigue

FATIGUE is the most common MS symptom—experienced by 75 to 95% of people with the disease. Approximately 50 to 60% of people with MS describe fatigue as one of their most troubling symptoms, regardless of their disease course or level of disability. The Social Security Administration recognizes fatigue as a significant cause of unemployment among people with MS.

Fatigue was recently defined by the Fatigue Management Panel of the Multiple Sclerosis Council on Clinical Practice Guidelines as:

A subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual and desired activities.

Based on clinical experience and careful review of the medical literature and research findings pertaining to MS-related fatigue, the Medical Advisory Board of the National MS Society makes the following recommendations:

* Because of the complexity of MS-related fatigue, the first step in effective treatment is to identify the cause(s) of the fatigue (e.g., any combination of factors, including co-existing medical illnesses, side effects of medications, depression, disrupted sleep, and fatigue caused by the MS itself.

* Once the source(s) of the fatigue have been identified, the treatment of MS-related fatigue is approached in a step-wise fashion in order to address all contributing factors.

The treatment of fatigue should include TWO major steps:

1. Management and elimination of any secondary causes of fatigue

2. Treatment of primary MS fatigue

Read this post in its entirety:

How to Manage MS-Related Fatigue

Thursday, March 12, 2009

Carnival of MS Bloggers #31 - Beauty and Inspiration

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Beauty, Inspiration, Honesty

The Wheelchair Kamikaze shares  

No, not photos of wheelchairs, but photos taken from a wheelchair. The camera I use to do the Wheelchair Kamikaze videos is actually a still digital camera that also happens to shoot halfway decent video, and I do a lot of still photography using the same camera/tripod rig.
I was an avid amateur photographer before I got hit with MS, and had to put photography aside for about five years because of the disabilities brought on by the disease. Funny thing is, while I tried my damnedest to stay out of a wheelchair, using all manner of braces and canes, I was physically unable to operate a camera. Once I finally agreed to get the wheelchair, I was able to once again pursue my photography passion. Since I got a camera with a flip out view screen and a flexible tripod as gifts this past Christmas, I've been able to start shooting again. I think there might be a little lesson in there for us all...
And that lesson is, of course, to always ask for really good stuff for Christmas...
Here are a few of the photos I've recently taken. Click on the thumbnails for a larger view...

Photobucket Photobucket Photobucket Photobucket Photobucket Photobucket

Mary lives with MS, works as a nurse, has started a travel blog, and writes beautiful poetry. Here is one I believe we all can relate to, found at Dealing with Human Pain by Travelogue.
After Awhile (first draft) by Mary E. Gerdt

After Awhile

After Awhile,
Things will be better,

Time will have passed,
Regrets will have faded,

Sorrows will dry after
The crying,

You will feel better,
Not like your dying.

After while,
When your back home

And safe in your place
Where you can roam,

And be one with nature,
Feel carefree again,

After awhile,
When we are older,

And we are settled,
And we are bolder,

We’ll reach for the sky,
Like we did before,

We’ll lose all our fear,
That closes the door.

After awhile,
The sorrow will fade,

That tugs at our heart strings,
That God alone made,

To keep us as humans, not a machine,
Who is hurt by a word, or an unkind deed.

Who heals when times get better and then,
Who bleeds and cries when losing a friend.

No mechanical device, we are flesh and blood,
And tears that we cry,
Rain down from above,
And fall from our faces down to the ground,
And wash off the fairies who watch us and frown,
Sad at all of our earthly emotions,
They stay close at hand when you’re feeling so lonely.

Never think you are alone in the middle of the night,
Or think your small world is causing a fright,
Open up and see the rest of the world
Is on your doorstep and ready to right,

All the bad ills and bad feelings you have,
May you see a world not so bad.
When you are feeling fear and evil intentions,
Look at a flower and its simple invention,

It is not so simple after all,
The flower can lift spirits after a fall,
The scent takes us to places long gone,
With the passing of time,
After while,
Sorrow will be done.

Lori shares some Fast Fun Facts about MS 
at 12 December 2008 - Saying It Out Loud.

Two out of three people with MS are women.

Your odds of getting MS increase by four times just by virtue of being born north of the 40th parallel. Canada has one of the highest rates of MS in the world.

According to 2007 research, only 24% of people with MS are wheelchair bound, and usually 15 to 20 years past diagnosis.

I have been told that finding comfort in the statistics about my condition is a tad odd, but I do.

As most people don't get MS, I've already beaten the odds. So, the likelihood that I will get the worst and most severe forms of the disease are even less. I'm also really fortunate that I'm under 40, living in a country with socialized medicine and great amounts of research dollars, in a province with Pharmacare, in a city with one of the best MS clinics in North America, and can survive on federal income supports until I can find a new job later this year. I shudder to think what our lives would be like if we were living in the US with Joe full time in school and me getting forced out of a job with no insurance benefits.

Seriously, think about that. Our lives would completely suck in so many ways I haven't even been able to fully imagine how much that would suck.

Don't get me wrong, my life is sucking pretty hard right now, but I think that we've plumbed the depths of that suckage. Unless something goes radically wrong before June I think we've seen the worst of the disease for the next five years or more.

I am fortunate to be diagnosed in 2008. If I were diagnosed even in the year 2000 I would not have the opportunity to get the drug I am currently on. I've been reading some phase 3 drug trial information and there should be oral medications that work better than the injection drugs we have now available mass market before I turn 40. There's a lot of holistic research being done in BC regarding exercise, fatigue relief, cannabis, nutrition and the like. In May I find out if I can be considered for some of those research projects.

I've decided that if they can't find a cure in my lifetime I want to be a part of trying to find one for the next generation. I want a cure, and barring that I want a treatment that's like the insulin for MS. I want to be able to manage this, and I guess that's going to be a process.

The social worker at the MS clinic gave me a nutrition article telling me to eat lots of antioxidants, omega 3 fatty acids and drink a glass of syrah, cabernet sauvignon or pinot noir a day.

As someone who loves bright fruit and berries, sushi and avocados, and red wine... eating for my health is going to be a real pain in the butt. ;)

I'm not really good at looking on the bright side of things, but I'm pretty good in a crisis. I'm not interested in becoming a motivational speaker or lying to people about what I'm really going through. I've always said that I am a realist not an optimist. I'm not supremely confident in my ability to want to live. That's the biggest one. I'm trying, but finding the will to live and actually do something with my life seems unlikely.

I'm not noble and things less than MS have destroyed my life to the point where no matter what I do my life will never recover. I have been brought to my knees by things far less than this disease and spent years in the abyss of depression, self-destruction and poverty.

Many people told me that the first year after diagnosis is really difficult but once you find your "new normal" you learn to deal better. That's probably true.

A year can change so many things.

This concludes the 31st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 26, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 24, 2009.

Thank you.
Comments for this post.

Tuesday, March 10, 2009

More MS Bloggers Have Joined the Neighborhood, Please Welcome Them

MS and Thriving - Joy - "I want Multiple Sclerosis to be afraid every morning when I get up. I want it to worry about what I will find to fight it off with today!"

My Life with Multiple Sclerosis - Dave - "The trials, hardships, successes and the need to persevere on with MS. On August 30th 2008 my life was permanently changed. To my wife Anne, thank you for being who you are!"

If I Can, You Can - Richard - "This is going to be a journey through time with me setting out to change a few things about myself and to help others along the way. I shall use this forum to document my objectives and to show my progress along this great journey of life."

Baby, MS and Me - Helena - Hellie is blogging her pregnancy with MS. If my math is correct, she's got 37 days until the baby is due to arrive. Hellie blogs at MS Trust (UK) and ironically her baby is due during their MS Awareness Week. How convenient is that?

Dave's Magical Brain or "Me and My Myelin" - Dave - "This blog was created so that I can share my MS experiences with the rest of the web wide world, get things off my chest, vent spleen, say how crap/good things are and generally update friends with my "situation" just in case they feel uncomfortable asking me directly."

Travelogue for the Universe - Mary - "A rambling train of thoughts about the universe and our micro solar system consisting of our dear Sun and other planets in a magnetic dance while we hurtle through space on the face of a rock and stare at flat screens where we attempt to connect while we detach."

12December 2008 - Lori - "I have had the symptoms of my newly diagnosed disease since May of 2008. I used to care about a lot of things, but now I'm not so sure if any of those things matter. This blog came as an idea I had in the shower the night before last. Maybe living out loud will help me find what matters to me and I'll find my reason for getting well. "

Monday, March 9, 2009

New Blog and MS Dog

Azoyizes' Blog

My blogs are going to be about Montana, my service dog. They will, for the most part, be about homemade dog food and treats that I make. I'm cooking for him because I feel that homemade is better than processed. I'm also having a great time finding healthy, easy recipes. I will also be blogging about homemade green cleaning products.

Azoyizes and MS

In January, I found out about an MS Yoga class that was available in my area. I signed up and began taking the class, and I'm so glad that I did. Most of the people in the class have MS, the others have some sort of limitation that precludes them from taking a regular Yoga class. Our instructor is 70, has taught Yoga for 40 years, and is just the sweetest woman you would want to meet and know.

Most of the exercises are done while sitting in a chair, although some of us get down on the floor for a couple of the exercises done toward the end of class, and for the relaxation portion. Montana loves the relaxation portion of the class. I lay down on a rug, and he lays as close to me as is physically possible with his head laying on my stomach. That, in itself, is comfort to both of us. Then, when it's time to get up off the floor, Montana stands close beside me on my left, still as can be, and I'm able to brace myself on him in order to stand up. Without him, I would either have to ask someone for help or not get down on the floor at all. It still amazes me that he adds so much independence for me. After class I feel great, much more loose and relaxed.

Friday, March 6, 2009

Pediatric MS: Meet Olivia

Please meet Olivia, one inspiring young lady.

She raised over $17,000 at the MS Walk at Jones Beach, NY, for team LIV LIFE last year. Her family was honored with the SPIRIT award from the NY Mets in September 2008. Olivia is currently doing a lollipop fundraiser in her school district and is speaking at an MS Society Spring Luncheon in April in New York.

Her mother, Rina, spoke at the MS Walk Kick Off Party for the MS Society in New York on Monday and was invited to a Research Programs Advisory Committee (RPAC) meeting at which doctors and scientists decide where the money goes from fundraising for the National Multiple Sclerosis Society.

So why is Olivia so involved with the cause of fundraising for MS research?

Olivia, age 15, has multiple sclerosis. She is a member of the growing Pediatric MS population.

In November 2006, Olivia had some numbness on her forehead and lip which didn’t last long. After developing a sinus infection from a cold, Olivia visited her pediatrician. Rina mentioned the numbness and the pediatrician said that it could be from the sinus infection.

A big day, January 31, 2007, Olivia had her braces taken off but later was very nauseous with a stomach ache. The next day she reported being dizzy and the pediatrician reassured them that a virus had been going around associated with dizziness. Only a few hours later, Olivia told her mom that she had two heads.

Would you be concerned? Certainly Rina was concerned for Olivia. Her eye doctor squeezed her in at the end of the day and diagnosed her with a 4th Cranial Nerve Palsy. Cranial nerve palsies can be caused by head injury or diabetes. They may also, but more rarely, result from aneurysm, meningitis, tumor, or multiple sclerosis.

Olivia was sent immediately to the ER for a CAT scan which showed inflammation and was admitted to the hospital to undergo an MRI (magnetic resonance image) on the following day, a Friday. A spinal tap was recommended by interns even before the results of the MRI came back. Olivia had not been seen by a neurologist, nor a pediatrician at this point, and her pediatricians didn’t have privileges at this hospital.

The first attempt at the lumbar puncture was unsuccessful and excruciatingly painful for Olivia. The intern apologized, “I’m sorry, we couldn’t get any fluid out.” Still thinking that Olivia just had a stomach virus, Rina demanded to see a neurologist or she would take Olivia home. By now, the double vision was gone and had lasted only two days.

When the neurologist did arrive, she conducted a complete neurological exam, then took Rina into another room to view the MRI images. Rina couldn’t believe what she saw. “That can’t be Olivia’s brain, there must be a mistake.” There were several obvious lesions and the neurologist said that it was multiple sclerosis.

In relaying this story, Rina describes how she broke down and collapsed to the floor. I can only imagine what devastating news it would be to hear the words that your adolescent child has an incurable, progressively disabling disease as MS. “How can you be sure?” The neurologist said it was 60/40 in favor of MS but that they needed another spinal tap to test for oligoclonal banding (O-bands). If the cerebrospinal fluid was positive for O-bands, then Olivia definitely had MS.

Over that weekend, the doctors tried two more times to complete a successful lumbar puncture, both times unsuccessfully. Finally Monday morning, Olivia was given sedation and underwent a spinal tap with the guidance of an x-ray machine. Cerebrospinal fluid was successfully obtained, but tested negative for O-bands.

The neurologist diagnosed ADEM (acute disseminated encephalomyelitis) and Olivia was released from the hospital. ADEM is often a one time event in children which mimics similar symptoms common in multiple sclerosis.
Clinical Features of Acute Demyelination in Children: MS in both children and adults is characterized by multiple episodes of neurological dysfunction secondary to inflammatory demyelination of the central nervous system (CNS). Just as in adults, however, not all children who experience an initial acute demyelinating syndrome (ADS) will develop MS. The term “clinically isolated syndrome or CIS” has also been applied to persons experiencing a first demyelinating event, although many authors restrict the term CIS to patients with an initial demyelinating event at high risk for future diagnosis of MS. As such, the term “CIS” is not universally applied across the entire spectrum of ADS events, particularly those considered to have a low risk of relapses.

An ADS is classified as “monofocal” if the clinical features were referable to a single CNS lesion, such as optic neuritis, transverse myelitis, or brainstem, cerebellar, or hemispheric dysfunction; and as polyfocal if the clinical features are localized to more than one CNS location. This is based on the physician’s clinical examination, rather than MRI findings (which could show asymptomatic lesions). “Polyfocal” features refer to more than one CNS lesion and when accompanied by problems with thinking, is termed, acute disseminated encephalomyelitis (ADEM) (Krupp, Banwell, & Tenembaum, 2007).
One week later after she was starting to feel better, Olivia developed restless leg syndrome, experienced numbness in her right leg which was accompanied by foot drop. Olivia was also experiencing intense headaches and a burn behind her right eye. Rina called the neurologist who ordered another MRI of the brain and spinal column which revealed more lesions. Olivia was admitted to Schneider Children’s Hospital on Long Island for 7 days and was treated with IV Solumedrol (high-dose steroids), but still didn’t receive a final diagnosis.
Treatment for Acute MS Relapses: Corticosteroids. These agents are very effective at reducing the inflammation (swelling, brain irritation) associated with acute MS attack, and are associated with a more rapid recovery from an acute MS relapse. While it remains to be proven that therapy for acute relapses alters the long-term course of MS, hastening of recovery from an attack leads to reduced school absenteeism and enhanced quality of life. Acute MS attacks in our pediatric MS population are managed with intravenous methylprednisolone (Solumedrol) 20 to 30 mg/kg/day (maximum of 1 gram) as a single dose for 3 to 5 days. Children with complete resolution of symptoms receive no further corticosteroids. Children with incomplete clinical recovery following the intravenous treatment are prescribed oral prednisone tablets starting at 1 mg/kg/day, followed by a tapering schedule with reduction by 5 mg every 2 to 3 days.
It took three months for Olivia to regain strength in her leg after this relapse. She played softball in school and was made team captain. Rina tells me that Olivia would fall a lot, though, and just laughed it off. Children have such resiliency to dust it off and keep going.
Differential Diagnosis of Pediatric MS: The diagnosis of MS requires that other possible diagnoses be excluded. Acute infections of the brain (i.e., viral, lyme, West Nile virus), deficiency of vitamin B12, inflammation of the brain with other autoimmune diseases (i.e., systemic lupus erythematosus, vasculitis, sarcoidosis), acute stroke or trauma, tumors, and metabolic diseases (i.e., mitochondrial or leukodystrophies) must be considered.
They sought 2nd opinions, one of which was with an immunologist who explained ADEM in greater detail. Ultimately, Olivia was referred to Dr. Lauren Krupp, director of the National Pediatric MS Center at Stony Brook University Hospital & Medical Center. Dr. Krupp pioneered the very first Center in the United States to treat children and adolescents with multiple sclerosis. There is now a network of six centers nationwide committed “to sharing advancements, better practices and to collaborate so that every child with MS and their family can benefit from the collective knowledge of the entire network.”

Dr. Krupp ordered another MRI in May which showed no new lesions, only scars, Rina says. To meet the criteria for MS, three or more periventricular lesions were needed. Olivia had four or five and at this point the doctors were suspicious of MS.
MRI Findings in MS: Magnetic resonance imaging (MRI) is a useful tool for supporting the diagnosis of MS in adults and children. The MRI appearance of pediatric MS, however, is not entirely similar to that of adult-onset MS, particularly in younger children. The increasing recognition and treatment with MS underscores the urgent need for pediatric-specific MRI diagnostic criteria. Mikaeloff and colleagues have demonstrated that the sole presence of well-defined lesions, as well as lesions perpendicular to the corpus callosum are highly specific for MS in children, although these criteria are only met by approximately 30% of pediatric MS patients (Mikaeloff et al., 2004). Using standardized scoring methods, Callen and colleagues have proposed pediatric-specific modifications to the currently accepted MRI criteria that are more sensitive and specific for the diagnosis of MS in children. (Callen et al, Neurology in press) These criteria required two of the following: (1) 5 or more lesions; (2) 2 or more periventricular lesions; and (3) 1 brainstem lesion. The validity of these proposed criteria predictive of MS outcome in children experiencing an initial demyelinating attack is currently being evaluated.
On August 6, 2007, Olivia woke up with shoulder pain which was attributed to playing softball over the previous few days. Rina says that, as the day went on, Olivia couldn't open and close her right hand and began to slur her words. The next morning her right leg felt funny. Rina contacted Dr. Krupp immediately and was told to wait 24 hours before calling since it might not be MS-related. For new or worsening symptoms to be considered an exacerbation of MS, they must last for more than 24 hours and be separated from other relapses by 30 days.

Rina just knew that this was the episode that would finally get Olivia diagnosed with multiple sclerosis, just nine months from the initial numbness on her forehead and lip. Olivia was admitted to Stony Brook Hospital and started IV steroids.

“In a room full of interns, doctors and my family, I asked Dr Krupp if Olivia has MS. She said 'Yes!" I didn't get upset in front of Olivia. I left the room and broke down,” says Rina. “It's very hard for me to relive this moment. It was just devastating. I knew she was in good hands, however, and she was treated for a few days and sent home with home care. We had to decide on treatment at this point. Being so naive to all of this, it was a difficult decision. We chose REBIF [Interferon beta-1a]. It's a 3x a week injection. I was trained at home to give an IV for the remainder of the steroids and another nurse came to teach us about REBIF. Olivia lost use of her right hand and arm completely. She couldn't move in any way.”

Olivia’s leg was the same, no movement, and she needed physical therapy immediately. Finding an appropriate physical therapist was a challenge nightmare. Eventually, they found an occupational therapist for Olivia’s hand and arm and a different one for her leg.

“She was a real trooper. I don't think she cried at all. I can't even tell you how I was. I was numb,” says Rina.
How common is MS in children? Analysis suggests that 2% to 5% of all patients with MS are diagnosed before their 16th birthday (Ness et al., 2007). These estimates, however, are based on retrospective review of established adult MS populations and may underestimate the true prevalence of the disease in the pediatric population. The annual average incidence of a first demyelinating event in Canadian children is 0.9/100,000, but has been reported as lower in other parts of the world (Banwell et al., 2007; Pohl, 2008). The incidence of MS diagnosis following an acute demyelinating event is the subject of ongoing research.
High school began for Olivia in September, and her mom called the school to explain that she had no use of her right hand and arm. Yet, Olivia wanted to go to school. She wore a brace to keep her wrist upright, but lasted only 2 days before she couldn't handle it anymore. Olivia found it too difficult to concentrate and she still couldn't write.

Olivia was home schooled for 2 months and it took her at least 4 months to start moving some fingers on that right hand. She started to regain strength in her leg, but continued to have bad headaches all along. Olivia has a tremor in her right hand and her right foot as residuals from her exacerbation which worsen every now and then since. Some days she felt pain in her legs but only for a few hours, maybe one full day, and then it would go away.
Paroxysmal symptoms: While an attack has been defined as a period of neurological dysfunction lasting for 24 hours, patients with MS can have brief episodes of numbness, tingling, visual loss, sensory, speech or balance problems , occur frequently (from 1–2 times per day to hundreds of times a day). These are called paroxysmal symptoms and were reviewed thoroughly in the last issue of MSQR.
Olivia was extremely tired all the time, missed a lot of school, and couldn't get up in the morning. She had all the flu-like side effects that come with the interferon medication, Rebif, plus elevated liver enzymes. Olivia switched her disease-modifying treatment to Copaxone (glatiramer acetate) which is a non-interferon daily injection Olivia she gives herself every morning.
Treatment to Reduce Number of Attacks: Immunomodulatory therapy. Both glatiramer acetate (GA) and interferon beta (IFNB) are immunomodulators, and decrease the relapse rate and MRI accrual of new lesions in adults with MS (IFNB Multiple Sclerosis Study Group 1993; Jacobs et al., 1996; PRISMS 2000; Comi, Filippi, & Wolinsky, 2001). Overall, these medications reduce the frequency of clinical relapse by 29% to 34%.

Interferon beta – 1a (Rebif®). In a cohort of 46 patients with pediatric MS, 22 µg SC of IFNB – 1a treatment was initiated three times weekly (Pohl et al., 2005). In five additional patients with very active disease, treatment was started at 44 µg three times weekly. Side effects were similar to those described for adult patients: injection site reaction (71%); flu-like symptoms (65%); gastrointestinal symptoms (10%); and blood count (39%) and liver function abnormalities (35%).

Glatiramer acetate (Copaxone®). Glatiramer acetate appeared to be safe and well-tolerated in seven children with RRMS at the daily dose of 20 mg daily administered SQ for 24 months (Kornek et al., 2003). Reported adverse reactions included injection site pain or induration and a short lived whole body reactions such as facial flushing and fast heart rate. After a mean treatment duration of 14.7 months, there was a reduced relapse rate from a baseline of 2.5 to 0.1 on drug and stable EDSS were reported. Again, efficacy cannot truly be evaluated in retrospective reviews of small groups of children.
On May 8, 2008, Olivia came home from school dizzy and sick. She took a 4-hour nap and woke up with her eye bouncing up and down slightly. By the time Olivia saw Dr. Krupp, her eyes were “bouncing like basketballs” (ie. oscillopsia which is a type of nystagmus.) She went on IV steroids and tried oral steroids for a few days which didn't help. Olivia had to be blindfolded for days because of the dizziness. She had another MRI which revealed one small lesion on her brain stem. This time Olivia was very frustrated, and to make things worse, her skin became sensitive to touch.

On July 9, 2008, Olivia complained that her tongue felt weird and hips were hurting. Rina rubbed her legs all night and prayed that it wasn't another relapse. The doctor recommended monthly pulse steroids monthly until the Copaxone reached full effect which can take 6-9 months, but the steroids were never scheduled.

On August, 6, 2008, Olivia had intense pain in her right eye and double vision when looking to the side. She was very nauseous, had pain in the neck and shoulders, and her skin was sore to the touch. Another week of IV Solumedrol.
Change of DMT should be considered in the presence of severe side effects, poor compliance, or in patients who appear to be poor responders. Again, while a standardized definition of treatment failure has yet to be adopted, most clinicians consider a patient to be failing a specific therapy if the child experiences more than two relapses in 12 months, or it the MRI demonstrates accrual of numerous lesions.
When Olivia developed right leg weakness on September 1, 2008, Dr. Krupp suggested getting aggressive with treatment - too many relapses - and recommended Tysabri (natalizumab). However, Rina was worried about possible Progressive Multifocal Leukoencephalopathy (PML). Instead, Olivia began a chemotherapy treatment with Cytoxan (cyclophosphamide) for three months. The experience was very depressing, going to a cancer center for pediatrics, and lots of side effects. Olivia worried about losing her hair which thankfully did not happen.

After Cytoxan therapy, Olivia underwent another MRI scan. When the results came in on December 22, 2208, Olivia had 2 new lesions, one of which enhanced. Very disappointing news. Dr. Krupp still wants Olivia to go on Tysabri but the family has not decided what step to take next. The new lesions didn’t cause any physical symptoms, however Olivia does have some cognitive damage.

Olivia is a girl who has always received honors and had an A+ average in everything. Olivia had wanted to be a neurologist, but now can't remember her work. She’s had to drop out of AP (advanced placement) classes because of the stress.

“She is handling it well though. Like I said, she is one tough cookie and doesn't let anything get her down,” says Rina.
While physical disability may occur relatively infrequently in the first decade in pediatric-onset MS, cognitive impairment may be a significant clinical concern (Banwell & Anderson, 2005). Formal neurocognitive assessments are required to fairly appreciate the breadth of cognitive impairments, as review of academic performance, however, many underestimate the deleterious effects of MS on cognitive capacity and academic potential. Cognitive impairments in attention and memory have been reported in approximately 60% of adults with MS (Rao, 1986), and emerging evidence suggests that impaired cognitive performance occurs in at least 30% to 40% of pediatric patients with MS. Deficits are most notable in attention, working memory, information processing, speed, and understanding of more complex sequential tasks.
Rina reports that Olivia has been doing well now and trying out for Softball this week. She had some pain in her legs this past weekend but she is handling it. They don't think that it's related to MS since she had worked out with a trainer this week.

Olivia and Rina also just returned from a whirlwind trip to London which I will have to tell you about in a follow-up posting.

Rina says, “Olivia tells me everything. She tells me when she is dizzy, to when she thinks she is having a relapse. She knows how upset I get but I try not to show it. I always tell her, she will get through it. We do talk about it once in a while but we try to live without thinking about it. We live as if she was never diagnosed until something comes up.”

“I do watch her like a hawk. She texts me from school and I die. I always think she is telling me that she isn't feeling good. When she is not feeling good, my life stops and I concentrate on her. It has been tough since I do have two other daughters. They have been good with all of this but my 13 year old has had a hard time. My other daughter is 6 and is understanding.”

Some of Olivia’s friends have not known how to handle her diagnosis and changing symptoms. Some friends are good with it and some aren't. Olivia did have some counseling but didn't find great benefit from it. She needed to talk to other teens going through the same thing, but found that there really wasn’t anything for children or teens LIVING WITH MS, only for children of parents who have MS.

Olivia was supposed to start an MS support group through the National Multiple Sclerosis Society last year, specifically for children and teens living with multiple sclerosis, but she kept having relapses. And Rina wants to establish support groups for parents with children who have MS. Reaching out to make contact with a small number of other pediatric MS patients, Olivia has connected with one from Massachusetts, one from New Jersey, one in England (Patsy), and most recently one from Arizona.

Olivia wants to create wide-spread awareness of Pediatric Multiple Sclerosis. She dreams of a campaign similar in scale to Breast Cancer Awareness. Not necessarily a ribbon, but maybe a bow or pin to stand out. She wants celebrity participation, maybe conduct a fashion show, or some sort of huge party with well respected individuals. Olivia believes this to be the only way people will listen and I don’t disagree with her. Olivia is very creative and inspiring and has some very good ideas.

This is a tremendously important issue. Parents and pediatricians need to be aware of the early signs so that children can be treated quickly to prevent permanent disability. More research needs to be funded to determine the best practices in pediatric MS neurological care. Bottom line is that WE NEED A CURE!!!!!
Although recognition of pediatric MS is increasing, there remains a great deal to learn. Optimal care paradigms remain to be decided, and collaborative efforts are required to meaningfully develop such care plans. Research initiatives are also critical as understanding gained through the exploration of MS in the youngest patients may unveil clues involved in the beginning of the MS disease process.
Olivia and Rina are passionate about Pediatric MS Awareness and are grateful to those who assist in their efforts. Maybe you - yes you - reading this now, know somebody who knows somebody who could help them in this endeavor.

Dream bigger than the National MS Society. Dream bigger than the MS Walk itself. What would you like to see happen to create awareness and raise funds for Pediatric Multiple Sclerosis?

Rina thanks you, Olivia thanks you, and I thank you!!!

For more information about Pediatric MS, and source for research quotes above, see - “Multiple Sclerosis in Children” by Jean M B. Ahorro, MD––The Hospital for Sick Children, Toronto, Ontario Canada; Brenda L. Banwell, MD––Director, Pediatric Multiple Sclerosis Clinic The Hospital for Sick Children, Toronto, Ontario Canada. Multiple Sclerosis Quarterly Report, United Spinal Association and the CMSC/North American Research Committee on MS (NARCOMS). Posted online on March 3, 2009.