Please Welcome New MS Bloggers to the Community

My Life with MS - Tiffany

It was August the summer of 09 and i was at my sisters graduation party and was experiencing some numbing in my feet and legs so any ways by the next day i was being carried into the car because i was unable to walk on my own. So my mother took me to the hospital and they ran a tons of tests on me and 4 days later came to the conclusion i had MS. This was one of the saddest/hardest days of my life. my life changed from that point on..

i have never fully recovered from that first episode, my balance has never fully came back, my knees are now locking and popping, bladder is always wanting to empty, toes and fingers are always numb.

Teens with MS and Other Disabilities - Jessica

I am currently 17. I am a singer/songwriter and follower of God. He is my life and my everything. I love to help other people and have been given that very opportunity via raeflections.me blog talk radio. I want to be active in the Multiple Sclerosis community after being diagnosed when I was just 16. I hope this blog helps other people with there struggles with different disabilities as the world would call them. But I call disabilities, different abilities. I am also a singer/songwriter pursuing a career in music. I've been involved with music ever since I was young. I love it with a fiery passion.

Spinal Tapped: Life as a Teen with MS - Cade

Hi!  I’m Cade, I’m 18 and a college student in New England, and I was recently diagnosed with multiple sclerosis (MS).

There are a lot of blogs out there about MS, but none that I’ve seen written by teens or for teens. So even though I don’t know a lot about my own disease yet (oy vey), I thought I’d give it a shot. I especially wanted to launch it now, even though I might not be well-prepared enough, because it’s the tail end of MS Awareness Week.

I hope to have it set up so guests can post, and I want to know about other teens experiences with the disease, or adults who had it as teens. Feel free to post thoughts, questions, or whatever. There aren’t many people with MS (400,000 in the US) so I don’t really know how much response this will get but I thought I’d try… If you read this, please pass it on to anyone you know who has MS.

Multiple Sclerosis: Blacks Do Get This Disease - KPFrank

A Beautiful, smart, African American mother, sister, daughter, and friend with MS.  I want someone to read this blog and see the WONder working power of Christ, and the power of his word....

I am a 35 year old African American that was diagnosed with MS on 2/16/2011. This diagnosis comes after a year and a 1/2 of crazy symptoms. I will hopefully shed some light on this mysterious disease through my blogs.

I prayed this prayer in 2008:
"Lord I know I have been a mess.....but if it be your will...bring me to the foot of your throne......all i ask is that you don't embarrass me and don't kill me.....but bring me to you"

So you see....I don't look at MS as a Death wish, (as I did) or even some disabling beast.....through therapy, diet, exercise, and of course my faith in the Lord I will have peace on this journey...I look at it as HIM saving me....and answering a prayer at the same time.

Holes in My Brain - Jamie

I eat too much. I think too much. I don't sleep nearly enough. I love wine, my husband, my daughter, and being snarky, not necessarily in that order.

MS Keeps Life Interesting - Tina

Things I love: my Lord, my husband, my kids, my family, my friends, and cheesecake. I run on Dunkin'. I'm closer to 40 than 30. And I happen to have ms. I won't capitalize it, because it's not worthy. I won't refer to it as "my ms", because I won't own it. But really, the most important thing to know about me is...I am blessed!

Tanya: Live Better With MS

My name is Tanya Asbreuk, and I have Multiple Sclerosis. It’s a condition I have, but it doesn’t define who I am or what I aspire to do. I’m still a writer and an artist and a singer and a dancer and a drafter and a sister and a daughter, even if I’m not dancing as much or doing as much Yoga as I used to. I’ve learned to create a positive attitude, and I really believe that’s the first step to healing! Since my diagnosis I’ve been simplifying my life, to make sure I can get done everything that needs to be done, while still having time for the things I really want to spend time on. I realize that’s a goal for most people, but dealing with the sometimes debilitating fatigue that is such a common symptom of MS has made me really, really aware of what I’m willing to spend time doing. I’m finally at a point at which I feel like I can have a real life again! Now, I want to share my story and my knowledge to help other people.

My MS Journey - Kelly

I was diagnosed April 6, 2010 with MS (multiple sclerosis). I decided to start a blog about this journey. I do not know why God decided I can handle this. I don’t know why He thinks I can handle a lot of things we have going on in our life. It’s what we do with it I think. I am looking to share my life, experiences, etc., and to get as much information I can from others. Here’s to a new journey.

New website:

Having MS - nice simulation exercises

7 More PML Infections and 1 More Death in Tysabri Patients; 102 Total PML/Tysabri Patients (March 2011)

This morning I woke up very early cause I had to make my way the hospital for my Rituxan infusion.  Very proud of myself that I was actually up early and could check some email before leaving.  I happened to check my blog stats and noticed that someone at BiogenIdec had been reading my blog posts related to Tysabri/PML patients.

Hmmm, what was going on over at Biogen I thought?  So I conducted a search for newly reported cases of PML and found nothing.  I lurked over at cafepharma and saw that a couple of (anonymous) people were discussing a new total of 102 cases.  I searched for news announcements on Twitter.....nothing came up.  So I left a quick thought around 6am.

After returning home late this afternoon, I find that indeed a brief Nasdaq article had been published this afternoon.  The first version was pulled within 10 minutes (before I could read it) but a corrected version quickly took it's place.  The correction can be found below.

Out of 102 reported cases to date, 42 (41%) have occurred in the United States, 55 (54%) occurred in Europe, and 5 (5%) were elsewhere in the world.  The total number of deaths in the 102 cases is 21 patients representing a 20.6% death rate amongst those Tysabri patients diagnosed with PML (progressive multifocal leukoencephalopathy).

CORRECT: Biogen Reports 7 More Infections In Tysabri Patients

("Biogen: 7 More Infections, 1 More Death In Tysabri Patients," at 4:09 EDT, misstated the regional distribution of cases in the eighth paragraph. The correct version follows:)

By Thomas Gryta
Of DOW JONES NEWSWIRES

NEW YORK -(Dow Jones)- Biogen Idec Inc. (BIIB) reported seven more cases of a rare brain infection among multiple-sclerosis patients taking Tysabri, sold with Elan Corp. (ELN) bringing the total number of affected patients to 102 as of March 4.

The Weston, Mass., biotech company reported that one more of those patients has died, bringing total deaths to 21. The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.

The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease.

Biogen recently halted enrollment in a major clinical trial aimed at testing the earlier use of Tysabri, citing a slower-than-expected pace of finding participants and the desire to devote resources toward "risk stratification" efforts for the drug.

Biogen is developing a blood test that may better determine the chances of patients contracting PML. The test recently received CE Mark approval in Europe and the companies are conducting large studies of its effectiveness.

Regulators have said that they monitor cases of PML as they occur and have concluded that the benefits of the medicine outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006--because of its effectiveness--with a strict access plan that monitors patients.

The overall global PML rate is now at 1.23 per 1,000 patients. A Biogen spokeswoman said the current PML figure is "still generally within what we saw in clinical trials."

Of the total PML cases, 42 were in the U.S., 55 were in the European Union and five in other areas.

The risk of the infection generally increases with the number of monthly infusions that a patient receives, but that rate appears to drop after 30 months. Biogen is studying this drop and warns there is limited information from patients on the drug longer than 36 months.

The most-recent data translate to a rate of 1.87 cases per 1,000 patients on the drug for a year or longer, rising to 2.41 per 1,000 for those on the drug for two years or longer, and dropping to 1.4 for more than three years.

Looked at another way, the rate is about 1.68 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.44 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com

(END) Dow Jones Newswires
  03-18-111637ET
  Copyright (c) 2011 Dow Jones & Company, Inc.

Happy St. Patrick's Day - Cheers

"Guinness is good for you"

Jazz Alphorn: Arkady Shilkloper

When I was working on my graduate degree, I attended an International Horn Workshop at which I first heard Arkady Shilkloper perform. He performed jazz horn and I ended up purchasing a signed copy of his album which I still in my collection.

Since 1998, Arkady has been performing jazz on the alphorn, not an instrument one would immediately think of as a jazz instrument. (The alphorn is the instrument used in the old "Ricola" commercials.) However the instrument, which can create pitches of the harmonic series, is unusually suited for the task.




Here is another video where Arkady is playing jazz alphorn taking advantage of multiphonics and circular breathing. Multiphonics is an extended technique whereby the performer creates two pitches by singing one note while buzzing another. A third or fourth pitch can appear with the addition of the sound waves. Basically, it's a pretty cool technique.

Patients Living with Multiple Sclerosis and Rheumatoid Arthritis

Patients living with more than one chronic disease face unique challenges.  Unfortunately, comorbidities seem more and more common especially with autoimmune diseases.  As someone living with multiple sclerosis and rheumatoid arthritis, I am understandable drawn to other patients who live with the same combination of diseases.

This week is Multiple Sclerosis Awareness Week so I asked a few MS/RA patients to share their stories with us today.  Six patients were kind enough to contribute.

Read these posts on HealthCentral:

Living with Rheumatoid Arthritis and Multiple Sclerosis: Interviews with RA Patients (MyRACentral)

Living with Multiple Sclerosis and Rheumatoid Arthritis: Interviews with MS Patients (MultipleSclerosisCentral)

Welcome MS Bloggers

Please welcome new MS bloggers to the community.  If you have a blog you wish to be included please contact me.  (If you have contacted me and I haven't listed you, please send me another email.) 

Dancing with Monsters - Kate
I'm an artist who has been living with multiple sclerosis since I was 20. I've discovered that thinking about chronic illness and healing as a creative process helps me move through the hard stuff and get back to the joy.

Dochas: Living a Life of Hope with MS -  Lydia
I am a 28 year old girl, from Dublin, Ireland and am only a few months into my journey with Multiple Sclerosis. I was diagnosed with RRMS in October 2010, and have been on Copaxone daily injections since November 2010. Dóchas is the Irish word for "Hope". I want this blog to encourage hope and positivity in others that are also dealing with Multiple Sclerosis.

My New Normals - Nicole
I'm a 35 year old married, but independent woman without little ones. I've gone from nursing in New Orleans, Louisiana to sales throughout mid-Atlantic Maryland and now writing with you, wherever you are! Enter Multiple Sclerosis. Damn! It ransacked my fast paced “normal" life like hurricane Katrina nearly wiped away New Orleans! There is more to me than MS and I am here to remember exactly what that is through an old passion....writing! It seems if you look hard enough you can findsomething you can control! For example, today I’ve chosen to move forward despite multiple sclerosis and this life changing exacerbation. Instead, of trying to be who I use to be I’m refining who I am now. BUT, boy would I at least like to drive!!!! If you have MS or for these purposes have been banned from driving. I would love to hear how you are coping. As for me, writing is slowly moving me closer to an impermeable happiness that stands independent of the circumstances of my life. Happiness despite...

The Day in My Life with MS - Jennifer
am a mother of four beautiful children, and a grandmother of one spunky 2 1/2 year old grandson. I was diagnosed with MS in 2008 - and found the need to share my story with the world. It isn't the end of life as you know it, even though your life may change drastically. You can find positive things to help you carry on... Positive thinking and activities help you to carry on. Carry on with a smile on your face... :-)

The MS Muse - Kayla
My name is Kayla. I was diagnosed with MS in 2006. I'm a 20-something classical musician and teacher, web developer, student, writer and more. I like books and music and mountains. This blog is a place for me to ramble about things MS makes me think about. Sometime soon I'll add a link here that tells my MS story. Thanks for reading! 

A Strong Cup of Tea - Mandie
I am 50 years old, having left England at 19 and arriving in the USA on 7/4/1979. I was diagnosed with Multiple Sclerosis in May of 2008 and my life has changed drastically since then....

Optimistic with MS - CSA
I am 27 years old. I was diagnosed with MS in September 2010. Being diagnosed with MS can be very difficult, so I decided to start this blog to try to express my feelings toward my diagnosis and my optimistic outlook for the future. My hope is to reach out to others who have been affected by MS, to provide a learning opportunity to those who know little about MS, and to provide people with ways to become involved in finding a cure.

Laughing with Primary Progressive MS - Karl
I'm a 44 yr old guy who is struggling with severe Multiple Sclerosis, effects of a spinal injury, severe depression, adoptee issues and abuse issues. I've been using humor a lot to combat my illness, hopefully that will come through here.

Walking Tall - Gilenya (new oral drug) Blog - Kathy
We noticed the first signs of Multiple Sclerosis in 1987. It began with numbness, tingling and difficulty walking. The official diagnosis came in 1992. I began Beta Seron in 1993 and have been on it until 2011; 18 years. On February 24, 2011 I went off Beta Seron, and on February 28, 2011, I began the first disease altering medication for MS, Gilenya.

365 Days of MS - Louise

Follow Maggie - Maggie


Me and MS -

Mein Leben mit MS - Birgit Bauer
Der Tag, an dem mir Ärzte mitteilten, das ich "Multiple Sklerose" habe, war der Tag, an dem mein Leben gegen eine Mauer prallte.  Mein neues Leben begann. Wie ich heute lebe, erzähle ich hier! Alles ist anders und ich bin das Gegenteil von dem, was vielleicht manch einer mitleidig erwartet. Was als Krankheit begann, derzeit nicht heilbar ist, wurde zur Herausforderung und zur Chance meines Lebens.

Blog Haus - MS: Leben mit Multipler Sklerose - Stefan
In seinen zweiwöchentlichen Beiträgen beschäftigt sich der Schriftsteller Maximilian Dorner mit Aspekten rund um das Thema Multiple Sklerose: ungewohnt, schräg - aber immer eines: betroffen