Friday, October 30, 2009

Tysabri in the News

Yesterday, I took the time to summarize the many news releases and articles surrounding Tysabri which is a disease-modifying drug for MS administered by IV every four weeks.

Read: Tysabri in the News with 24th Case of PML

Also, the NMSS compiled relevant information which is printed below.

Update on Tysabri and PML: Company Releases Details of Cases and Risks

According to information released yesterday by Biogen Idec, there have been 24 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri® (natalizumab, Biogen Idec and Elan Pharmaceuticals) after it became available for prescription in July 2006.

As of the end of September 2009, 60,700 people have used Tysabri worldwide. Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the sponsor has now released data suggesting that the risk increases with increasing time on therapy, starting out lower than the one-in-one thousand level that was estimated at the time of Tysabri’s re-approval in 2006, and rising after two years of infusions to about one in one thousand. There is insufficient information to determine the risk of PML in those who have been on therapy for three years or more. Right now only 2,000 people have been on the therapy for over three years.

This release followed an October 23 announcement from the EMEA, the European equivalent of the U.S. FDA, indicating that one of its advisory committees was launching a review of the risks and benefits of Tysabri in light of the increasing number of new cases of PML.

Signs of PML: Typical symptoms associated with PML progress quickly over days to weeks, and can include:
• personality or behavioral changes
• changes in thinking, memory, and orientation leading to confusion
• onset of seizures, clumsiness or progressive weakness on one side of the body
• disturbances of vision

If individuals taking Tysabri experience new, unusual symptoms, they should contact their prescribing physician immediately. Physicians who need guidelines on the protocol to follow when they have a patient on Tysabri who experiences unusual symptoms should contact Biogen Idec.

Details of Cases: According to the company, the 24 cases of PML have occurred in both men and women who had been given infusions of Tysabri every four weeks for a duration ranging from one year to three and a half years, with an average of two years.

  • 16 of the cases occurred in Europe, and 8 in the United States
  • 4 of the 24 died
  • The degree of disability in the 20 survivors is a wide spectrum: at the milder end, some have recovered enough to return to work, and at the other extreme, some are confined to bed, requiring extensive assistance with activities of daily living, and others were in between this range. Further details of their condition were not provided.
  • It appears that when PML is detected and treated early, it generally improves outcomes. It is important that individuals taking this drug and their doctors be vigilant in monitoring for any occurrence of new, unusual symptoms that might indicate PML.
  • Based on these cases, the sponsor stressed that, contrary to prior information, the presence of gadolinium-enhancing lesions on MRI does not exclude the possibility of PML. Likewise, the absence of JC virus DNA in the spinal fluid does not exclude PML.
  • There has been no characteristic among those who have developed PML that would give substantial clues to who might be more likely to develop it, except that half of the cases had prior histories of having been on immunosuppresive therapies, such as mitoxantrone, and less commonly, azathioprine and methotrexate.
  • Right now there is no test that can predict who is more likely at risk for developing PML while using Tysabri; in a large company-sponsored study, testing of blood cells, plasma, serum and urine for the causative JC virus in people before and after 48 weeks of Tysabri therapy (Rudick et al, ECTRIMS 2009) did not show any differences in the presence of the virus in those fluids. The results of these studies, performed at the U.S. National Instituties of Health, differ somewhat from an earlier study (N. Engl. J. Med. 361:1067, 2009) suggesting higher virus levels after treatment.
  • When PML was suspected, Tysabri infusions were halted. There is no specific therapy to treat PML, but the best hope is to reconstitute a person’s immune responses. In most of the 24 cases, once PML was confirmed, Tysabri was removed from their systems with the blood-cleansing treatments of either plasma exchange or immunoadsorption.
  • During the aftermath of PML, as the immune system begins to recover, a condition called IRIS (immune reconstitution inflammatory syndrome) usually occurs about 4 weeks after the removal of Tysabri from the system. The sponsors suggested that some of the treating physicians found that prompt use of intravenous steroids to treat this brain inflammation led to improvement.

The FDA provides post-marketing safety warnings on Tysabri at this link, although the updated information above is not currently provided.

Thursday, October 29, 2009

RA and Diabetes

Is there a link between diabetes and rheumatoid arthritis?

What is the prevalence rate of this particular comorbidity?

These were tough questions to answer as none of the literature from NIH, CDC, Arthritis Foundation or American Diabetes Association addresses this question directly.

Come read what I found and get proof that I really, truly have a geeky brain at times.

Is there a link between Rheumatoid Arthritis and Diabetes?

Wednesday, October 28, 2009

Not on My Watch

A representative of the Not on My Watch infection prevention campaign, which is supported by Kimberly-Clark, asked that I share the following information with you. Preventing infection is always a good thing to be aware of.

**************
When someone develops an infection at a hospital or other patient care facility that they did not have prior to treatment, this is referred to as a healthcare-associated (sometimes hospital-acquired) infection (HAI).

Healthcare-associated infections (HAIs) are a global crisis affecting both patients and healthcare workers.

According to the World Health Organization (WHO), at any point in time, 1.4 million people worldwide suffer from infections acquired in hospitals.

A Centers for Disease Control (CDC) report published in March-April 2007 estimated the number of U.S. deaths from healthcare asociated infections in 2002 at 98,987.

The risk of acquiring healthcare-associated infections in developing countries is 2-20 times higher than in developed countries.

Afflicting thousands of patients every year, HAI often leads to lengthening hospitalization, increasing the likelihood of readmission, and adding sizably to the cost of care per patient.

Financially, HAIs represent an estimated annual impact of $6.7 billion to healthcare facilities, but the human cost is even higher.

Until recently, a lack of HAI reporting requirements for healthcare facilities has contributed to less-than-optimal emphasis being placed on eliminating the sources of healthcare associated infections. However, growing public anxiety regarding the issue and resulting legislation on state and local levels demanding accountability is serving to accelerate initiatives to combat HAIs.

To learn more about the impact of healthcare-associated infections for both medical professionals and patients, please visit www.haiwatch.com.

Welcome to the MS Blogging Community

MS and Me by Erika
I want to write about my experiences and talk to people. You don't have to have MS to leave comments here and chat. I want to educate people on this. One of the hardest things to deal with is explaining to your family and friends why you can't make it to something, your to tired for this or that etc, when they can't visably see whats wrong with you. The accusations of lazy fly, and the depression sets in.

So here's my diary of dealing with it and trying to stay upbeat (doesn't always work warning).

It's a Shit Business by Steve
"online diary-cum-therapy-hole for a young(ish) man chronicling his life with Multiple Sclerosis - there will be jokes, too."

Wipe Out MS by Alan
Wipe Out MS is a project that is sponsored by my company, Glass Aid. It's in part due to my personal connection with Multiple Sclerosis (MS) and a desire to contribute towards finding a cure.

Erik's Multiple Sclerosis & Lyme Blog (relocated)
My life of symptoms, doctor visits, seemingly endless and massive semi-tax deductible "contribution" to the pharmaceutical industry, and getting better.

~LiFe as I kNoW iT ~ by CaliforniaGirl
"I have IT because it can't have ME so... take that MS, you're dead to me"

Norma Lee Good by Norma
Welcome to my life. I am a woman who recently has been diagnosed with Multiple Sclerosis and Osteoporosis. I am happy to be married to my best friend and we are blessed to have a beautiful little boy. Find a comfy place to sit, relax and see for yourself how my sense of humor,stubborness and determination helps me manage Multiple Sclerosis, being Mommy, and everything else that I experience during my day. Enjoy!

Blah Blah Blah... by Damon
So let's start this off MS Style! I just finished my 13th shot of Avonex just now. 13 is a good number, right?! Super lucky? I might be mistaken, but 13 is the number of people who weren't murdered, didn't lose everything, and never ever ever had bad luck... ever.

Walk with a Big Stick by Jan
I’m a youngish baby boomer, a mother of two, a sister, a daughter, an ex-wife, a good friend to many, a professional photographer, an accomplished amateur cook, a former ballet dancer and weight trainer, a music lover and fan of the Blues, an insatiably curious learner, a citizen of the world, and a full-time patient.
The Pitter Patter Boutique by Sarah
With the impending diagnosis of MS (I know it's coming), it has forced me to really sit back and take a good look at my life. Who am I? Who do I want to be? What do I want to do? How am I going to handle this?

If you have an MS Blog, please let me know about it. Welcome to the Community.

Tuesday, October 27, 2009

Five Weeks Sick and Counting

I have been sick in one form or another for five weeks now. At first it was a cold (where I haven't had one in so very long) for two full weeks which turned into bronchitis. I finally went to my PCP when the phlegm become a really gross opaque color and I couldn't even think about talking without causing a coughing fit. Antibiotics took care of the crude and narcotics took care of the cough.

Then, my rheumatologist insisted on my getting another pneumonia vaccine in preparation for using Rituxan. My body got a little confused and thought it was sick again. A week later, I finally located a place which had a new shipment of seasonal flu vaccine. Coincidentally they also had just received the H1N1 flu vaccine which my rheumatologist also insisted upon. So I got more shots last Wednesday, and once again my body thought that it was sick.

Unforunately, the cold virus which must have been hanging around in there somewhere got all excited and settled in for another round. This past Saturday I finally reached the point of "I want my Mommy!" Unfortunately, my Mom is sick too after getting her shots last Thursday.

A pseudoexacerbation appeared on the scene, a situation I decided to blog and vlog about for the new website. It's kinda funny. My connection there commented to me today - I just read your blog and was thinking "I've never heard someone sound so happy that something is 'pseudo'".

Thanks Stefan, yes pseudo in the MS world is a good thing....although it can still suck.

Fortunately, I'm in much less of a whiny mood and am feeling better. Seriously, five weeks and counting of being ill is getting to be a drag.

Monday, October 26, 2009

MS Central Question of the Week

Welcome to the final week of October!! The one in which young ghouls and goblins plan their festive activities, while the rest of us try not to eat all of the candy before the parade of Tricks and Treats come along.

(or maybe that's just me, Undecided )


In honor of Halloween, I'd like to know.....

What would be your perfect MS costume?

Or rather, what costume or character best fits your current MS symptoms?

Last year, I would have been Frankstein's Monster as iconically portrayed by Boris Karloff in 1931. I'm convinced that the monster had a bad case of spasticity.

This year, I'm more of a surfer-dudette who finds herself making quick adjustments (complete with flailing arms) while trying to ride that imbalance wave to shore.

So what character is your MS playing this year?

Come answer at MS HealthCentral.


Friday, October 23, 2009

Carnival of MS Bloggers #47

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

Poetry, Positivity, and Battles

Haiku - Caretaker Exchange
by Judy of Peace Be With You


I have MS but
My caretaker broke his hand.
I am caretaker.

Marriage vows promised
In sickness, in health, rich, poor
Partnership defined.

I am nurse and cook
Dizzy, foot dragging, stumbling
A delicate act.


Staying Positive is Hard! 
by Maryann of azoyizes and MS

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?


Haiku - We All Fight Battles 
by Judy of Peace Be With You


No one wants to hear
What is wrong with me today.
We all fight battles.

Mine might seem special.
They are only so to me.
Forgive my weakness.

It’s just that some times,
MS fear seems to trump joy.
My resolve falters.



How I Fight MS 
by Lisa of Brass and Ivory

Today's the big launch of a top secret project which a few other bloggers and myself have been working on for the past couple of months.


I like the concept of living victoriously with MS, because that is what we each strive to do I think. MS is not something we conquer but something with which we can live a positive life.

The other bloggers involved in this project include:
Jen of MS Strength
Julie of Maybe I'm Just Lazy
Kimberly of My Journey with MS
Bill of Plates and Palates

Please tell me what you think. Thanks.


This concludes the 47th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 5, 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, November 3, 2009.

Thank you.
Comments for this post.

Thursday, October 22, 2009

Promises Made, Promises Kept: Myelin Repair Foundation

The Myelin Repair Foundation set out to raise $25,000,000, find targets for myelin repair, and even license a target in a brief five years. They are $20,100 shy of meeting each goal within the time frame established. Watch this video produced to celebrate this accomplishment and read the message provided below.




From our long-time supporter and volunteer Area Director, Bob Gregory:

I'm a keeper of lists; a setter of goals, a manufacturer of timetables. Add to this a great deal of impatience and inability to accept the status quo and you have the makings of great frustrations. So when I was diagnosed with multiple sclerosis in 1990 I fell into old habits. I was going to be back to my marathon running ways by 1995. Or by the time my daughter went to school in 1998. Or by the time the millennium turned in 2000. Each time reluctantly pushing out my arbitrary timetable with no real logic behind it.

Then I had dinner in Chicago in December 2004 with Scott Johnson and Rusty Bromley. They talked about pulling together the top researchers in some of our most valued universities; who didnt know each other except by reputation and have them collaborate and thereby sacrifice their most valuable asset: the proprietary use of their ideas. And by the way were going to raise $25 million and license a target all in 5 years.

My heart said yes. My brain said no way. But there was a plan!

As you can see from this report, it worked: Promises Made, Promises Kept. Read the report here: http://myelinrepair.org/documents/Annual_Report2004-2009.pdf

Family Discussions

Yesterday, I successfully tracked down where a flu shot could be had in the Northern Virginia area. A few weeks ago when I was at my PCPs office seeking medical treatment for bronchitis, my doctor said that they were already out of their 1st shipment of the regular seasonal flu vaccine and I could come back when their 2nd shipment arrived.

Then last week I was at the rheumatologist’s office and discussing switching RA meds. She insisted that I get both flu vaccines but that her office was out of their 1st shipment of the seasonal flu vaccine. I could come back in when they got their 2nd batch. Today I called that office and discovered that they were just informed that they would NOT be receiving any more shipments. Yikes!!

Ok, so today I was on a mission. Find someone who had the regular flu vaccine!! Oh, btw, my rheumy also gave me a script to prove I was a “high priority” person for the H1N1 vaccine. Didn’t think that I’d luck out but I found a CVS Minute Clinic who had both types....who had just received new shipments!! Today was the 1st day which the H1N1 vaccines were even available in our area and the county health department had already run out. In less than ONE DAY!!

So, anyways back to the real point of this conversation. I was talking to my aunt on the phone discussing the availability of flu vaccines. She is a nurse and says that supply is short in her area as well. I was telling her about my day when I casually mentioned that my rheumatologist had wanted me to get both flu vaccines.

“Why do you have a rheumatologist?” my aunt asks.

Because I have rheumatoid arthritis.

“You what?! I didn’t know that.”

Yeah, I was diagnosed in, ummm, 2007.

“I’m so sorry to hear that.”

It’s okay. I’m just special. I got to double dip in the disease department.

“I didn’t know and I’m really sorry.”

We’re talking about changing meds soon....

This is where the discussion moved on to medications and choices, etc. In addition to being a nurse, my aunt lives with Lupus and her doctor is recommending Remicade (which happens to be an RA drug given by infusion). In discussing adverse side-effects, her doctor explained one risk in a new way. There is an increased risk of lymphoma in patients who use Remicade. However, lupus patients have even a greater increased risk of developing lymphoma anyways. So the doctor said that taking Remicade might even lower her risk of developing lymphoma. ?!

Anyways, she’s thinking about it.

Very interesting conversation. I did not realize that I evidently had not discussed RA with her. But then again, I think that the last time I saw her in person was before the outrageously horrendous flare which ultimately led to my RA diagnosis seven months later.

Just something I hadn’t considered. My family back home probably doesn’t know because I didn’t make the same type of big announcement that I did with the MS diagnosis. Very interesting. I’ll have to ponder that one.

In the meantime, my body thinks that it’s sick again but I know better. Those were dead viruses, body, get over it and start building those antibodies. But keep from making me cough like crazy, okay? Thanks.



P.S. The Carnival of MS Bloggers will be coming tomorrow.

Wednesday, October 21, 2009

Anxiety Disorders and Multiple Sclerosis

Much has been written about MS and depression, but very little about MS and anxiety disorders, specifically panic disorder, obsessive compulsive disorder, and generalized anxiety disorder.

I found a fascinating article in the journal Multiple Sclerosis, Anxiety disorders and their clinical correlates in multiple sclerosis patients by M Korostil and A Feinstein (Multiple Sclerosis 2007; 13: 67-72), which sought to determine how common anxiety disorders are in patients with multiple sclerosis. The study was completed by collecting neurological and demographic data, as well as interviewing subjects and completing a battery of assessments, of 140 MS patients who attend a neurological outpatient clinic in Toronto, Canada.

The authors conclude...

Anxiety disorders are common in patients with MS, but are frequently overlooked and under-treated. Risk factors include being female, a co-morbid diagnosis of depression, and limited social support. Clinicians should evaluate all MS subjects for anxiety disorders, as they represent a treatable cause of disability in multiple sclerosis.

Read this post in its entirety:

Mental Health and MS: Anxiety Disorders

Tuesday, October 20, 2009

Untitled

Untitled

Am I the same as I was before,
Yesterday, today, and tomorrow?

Am I the same as I was before,
Before the moon did rise?

Am I the same as I was before,
When no one knew my name?

Am I the same as I was before,
Before multiple sclerosis did come?

The birds have stopped chirping
During the middle of the night
As the leaves fall to the ground.

The dogs do not rest outside
Under the stars, moon, nor clouds,
As too cold it’s become.

I sleep snugly in my bed, as thoughts
Go racing through my head.

Am I the same as I was before,
Before multiple sclerosis came?

Am I the same as I was before,
When no one knew my name?

Am I the same as I was before,
When the sun begins to rise?

Am I the same as I was before,
Today, yesterday, and tomorrow?


Monday, October 19, 2009

How I Fight MS

Today's the big launch of a 'top secret' project which a few other bloggers and myself have been working on for the past couple of months.


I like the concept of living victoriously with MS, because that is what we each strive to do I think. MS is not something we conquer but something with which we can live a positive life.

The other bloggers involved in this project include:
Jen of MS Strength
Julie of Maybe I'm Just Lazy
Kimberly of My Journey with MS
Bill of Plates and Palates

Please tell me what you think. Thanks.

P.S. Yes the website is sponsored by EMD Serono, but it is entirely unbranded and if you know the bloggers, then you know most of us (if not all) do not even use Serono MS products.

Sunday, October 18, 2009

Soundtrack Tweaking: "Cloudy with a Chance for Meatballs"

This is unbelievably hilarious!! Better not be too loud or sharp otherwise there will be consequences. ;)

Saturday, October 17, 2009

Different Medications for Different Folks

Hey folks. I've got some exciting news and changes upcoming. If you read my post over at MS Central yesterday, then you know what I'm talking about. My rheumatologist and I have agreed, with the blessing and excitement of my neurologist, to try Rituxan to treat my rheumatoid arthritis.

Coincidentally, Rituxan (rituximab) is being studied as an anti-CD20 monoclonal antibody treatment for relapsing MS. It depletes the B-cells as opposed to the T-cells which are depleted by Tysabri. And just like Tysabri, it carries significant risks.

Here are the results of the Phase 2 trial which were published in the New England Journal of Medicine in February 2008. Trials of rituximab in progressive MS were unsuccessful.

I have some investigating to do in regards to insurance coverage, hospital preference (it is administered in the hospital as infusion-related adverse events were noted during the initial infusion), pre-authorizations, financial assistance from Biogen or Genetech (makers of the drug), and finding someone who has the seasonal flu vaccine as both my doctors' offices are out right now.

I will be receiving a 6-hour infusion on Day 1 and again on Day 15 (which makes up one course of treatment) followed by another course of treatment 6 months later. This is the standard protocol as used in rheumatoid arthritis (which I certainly have for those who are wondering at off-label use).

My neurologist wants me to stop Copaxone for two weeks beforehand and I will continue to use methotrexate which is a requirement for use of Rituxan in RA.

I've been digging into research studies and do like what I see in regards to RA effectiveness. If it helps my MS, that's even better!!!

Of course, I will keep everybody posted on the process and my experience.

Thursday, October 15, 2009

Belated Anniversaries

Uh-oh. Here I was thinking - Oct 15, Oct 15, Oct 15 - I will talk about the anniversary of my diagnosis. Remembering that week. On Tuesday night I was attending the monthly newly-diagnosed meeting at my neurologist's clinic and the discussion came to 'when' we were each diagnosed.

It was our first meeting of 10 months of 2 hours undivided attention from the fabulous nurse Carol Saunders and my neurologist, Dr. James Simsarian. (Sadly, Carol finally retired this summer. She was always MY go-to person.) This group provided an opportunity for each of us to learn about a new topic related to MS, to ask questions of the professionals, and to compare notes with each other.

It was one of the best offerings my clinic had and I'm sure saved a lot of time from their perspective in being able to answer the most common questions outside of office appointment time. Most likely this extra time was financed by educational funding from a pharma company, but that aspect of the meetings was never mentioned, thankfully.

So in that first meeting, we were learning something about each other. BTW, caregivers and spouses were invited and present. Lots of support all around.

The question came up - When were you diagnosed with MS? My response - I haven't been just yet. I will probably get the diagnosis tomorrow when I come in for my appointment tomorrow (with Dr. C who I originally saw before the official diagnosis).

I knew what my most recent MRI report said. And I had already been receiving invites to MS-related offerings from the clinic since August when I had the lumbar puncture and 5-day round of Solumedrol. My diagnosis was not a surprise, I saw it coming from "a mile away" so to speak.

But somewhere in my head the 12 in October 12 turned into a 15 as in October 15. Silly me missed my anniversary. LOL. Seems like I mix up letters and numbers too much, or more than I would like. So many other people with MS talk about that very same thing. I'm not alone, thankfully.

So Happy MSiversary to me!! Four years and counting, although it seems like much longer. Almost seems like a lifetime. LOL.


Wednesday, October 14, 2009

RA and Fibromyalgia

Rheumatoid arthritis is an inflammatory disease of the immune system which first targets the synovium, or lining of the joint, resulting in pain, stiffness, swelling, joint damage, and loss of function. Inflammation most often affects joints of the hands and feet and tends to occur symmetrically which helps to distinguish it from other diseases. The Arthritis Foundation estimates that 1.3 million Americans, or about 0.6 percent of the U.S. adult population, live with rheumatoid arthritis.

Fibromyalgia is a chronic disorder that causes pain throughout the tissues that support and move the bones and joints of the body. Pain, stiffness, and localized tender points occurs in the muscles and tendons, particularly those of the neck, spine, shoulders, and hips. Patients often experience fatigue and sleep disturbances. The National Center for Chronic Disease Prevention and Health Promotion (CDC) adds that other symptoms may include tingling or numbness in hands and feet, headaches (including migraines), irritable bowel syndrome, and cognitive difficulties.

It is estimated that fibromyalgia affects 5 million Americans, or about 2 percent of the U.S. adult population. For unknown reasons 80 to 90 percent of those diagnosed with fibromyalgia are women, although men and children can be affected. People with certain rheumatic diseases, such as rheumatoid arthritis, lupus, and ankylosing spondylitis (spinal arthritis), may be more likely to have fibromyalgia, too.

Read this post in its entirety:

Can I have Rheumatoid Arthritis and Fibromyalgia?

Tuesday, October 13, 2009

Life is Grand

Today's post at MultipleSclerosisCentral.com is a departure from my normal research and storytelling. This time I ask readers to answer a variety of questions and to voice their opinions. Please head over to my post "Ain't Life Grand" and share your thoughts. I really appreciate it.

Thanks,

Monday, October 12, 2009

Let's Work Together: World Arthritis Day 2009


World Arthritis Day: 12 October 2009


Each year World Arthritis Day focuses on a different aspect of living with a rheumatic disease. World Arthritis Day falls on 12 October, but our campaigns are designed to last throughout the year and beyond.

This year’s ‘Let’s Work Together’ theme considers the challenges of work, be it paid employment, voluntary work or work at home supporting a family, and embraces people with rheumatic diseases, healthcare professionals and employers.

The aims of World Arthritis Day are:

  • To raise awareness of arthritis in all its forms among the medical community, people with arthritis and the general public
  • To influence public policy by making decision-makers aware of the burden of arthritis and the steps which can be taken to ease it
  • To ensure all people with arthritis and their caregivers are aware of the vast support network available to them.

The WorldArthritisDay website is supported and managed by EULAR, the European League Against Rheumatism. At the 2008 EULAR Autumn Conference for People with Arthritis/Rheumatism in Europe (PARE) a Charter for Work for People with Rheumatic Diseases was developed. The Charter for Work was launched in March at the Alliance Against Arthritis (AAA) event in Brussels. To find out more about the Charter for Work click here.

To support our campaign please complete our ‘Let’s Work Together’ survey, which is aimed to gain an understanding of the experiences and perspectives of people with rheumatic disease, employers and healthcare professionals so we can work together to develop positive ways in which these can be improved.

To help generate significant national and European statistics and bring this important discussion to the media we need a maximum number of people in each category to fill out the appropriate survey (minimum of 100 in each section per country)

The survey is available in 12 European languages and has questionnaires for:

  1. People with rheumatic diseases
  2. Physicians and allied health professionals working with people with rheumatic diseases
  3. Employers

Make your national statistics count: Please ask people with rheumatic disease, those that treat them and employers in your country to complete the survey and to encourage their contacts to log on too.

Click here to start the survey in your own language:

If you would like help with work, check out our ‘Let’s Work together’ support materials, which will be launched on World Arthritis Day and available in English to download individually, or as an information pack. The support packs will also be translated in other languages later in the year.

  1. Young people who are just starting out in the world of work
  2. People who were in work when they were diagnosed
  3. People re-entering the work place after rehabilitation

Find out more about our ‘Let’s Work Together’ photographic competition click here.

Campaigning support materials for national organisations representing people with rheumatic diseases can be found in the password protected area of this site. Click here to access the password protected area (coming soon).


Thanks for helping to spread the word and awareness!!

Sunday, October 11, 2009

Three Trumpets At Once!!

Gunhild's performance is a hoot!! Fantastic and hilarious.



Enjoy!!

Thursday, October 8, 2009

Carnival of MS Bloggers #46

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

Disability, Poetry, and Superpowers

Are We Disabled?
by Jackie of MSunderstood

So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy.

I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry.

Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy)

Disability is defined by the Americans with Disabilities Act of 1990 as "a physical or mental impairment that substantially limits one or more major life activities.

Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me.

At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems).

What is disability to you? How do you answer these questions?



Poetry: 340 and Music
by Mary at Travelogue for the Universe


Three Four Oh

340

The code

Some one

Thought

Should describe what

I have and others have

And try to describe

By words

And symptoms

As varied

As the colors on a rainbow.


340

The international number

That doctors use

And insurance companies

Cringe at when they see

The number

That means expensive

Meds, treatments and tests

And a person who may not work

Long enough to pay it all back.


340

I looked for wisdom in that number

And some sign

That the number meant something to me

Or those others with what I have

That quirky strange set of symptoms no one can see but me right now

Some day perhaps I could be identified

By wheels or a cane or a staggering gait.

For now I can keep others from knowing

What I have

Is

340
_____________________________________________________
notes: "340" is the International Coding Term for Multiple Sclerosis. It is used for Doctors, Hospitals, billing, etc. In numerolgy it is reduced to "7" which is a very unique number. Am I over googling??? Oh, who cares....mary _____________________________________________________




If you could have any superpower, which would you choose?
A local radio show poses this question in a game called Blatant Stereotyping. From what I recall, the favorite answers are usually along the line of being invisible or able to read minds. Superpowers which seem likely to introduce more problems if you ask me. I'd never really contemplated which I'd choose because, well, it's pretend and I couldn't think of one that didn't serve up its own dilemmas. That is until the other morning.

Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.

Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.

So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.

The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.

Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.


This concludes the 46th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 22, 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, October 20, 2009.

Thank you.
Comments for this post.

Wednesday, October 7, 2009

Positive Steps which Help to Lessen Depression

At the time my depression returned during graduate school, I was also extremely stressed while maintaining a schedule of 2 part-time on-campus library jobs, 2 freelance symphony jobs which rehearsed and performed on the weekends at a location over two hours away from campus, and the normal required doctoral coursework. My life was more than booked solid. So, I decided to take advantage of the counseling services available at the Student Health Center.

One of the suggestions which the counselor had (she happened to be a student herself working towards a Master’s in Social Work) included doing something nice for myself, such as pampering with a warm bath and body lotion. Another suggestion was to find more time for myself in the schedule....a schedule which I had planned precisely down to 15-minute time blocks. Neither of these ideas seemed to be practical nor appropriate for me at the time. However now as I look back, they seem to be good ideas in general.

Below is a list of Positive Steps (as presented by the Multiple Sclerosis Association of America) which can be taken immediately to help lift one’s mood:

1. Exercise. Exercise is proven to produce an increase in chemicals such as endorphins, which can make us feel less depressed – and can help to lessen fatigue as well. Exercises are available for individuals of all ability levels, and patients should discuss an appropriate exercise program with their doctor. (Specific exercise should only be done with a physician’s approval.)

Read this post in its entirety:

Positive Steps to Take When You are Stressed and Depressed

Patients for a Moment at Single Gal's Guide to RA


Sara hosts a great Patients for a Moment edition at her blog, The Single Gal's Guide to Rheumatoid Arthritis. Please take a moment and go enjoy some of the best in the patient blogosphere.

Tuesday, October 6, 2009

The Meaning of Community

I've been thinking a lot lately about what it means to be part of a community, a group of people with a common interest. [See definition of community below.] If you blog and you have multiple sclerosis, then you are automatically part of the MS Blogging Community, right?

Or does community describe the group of individuals who congregate at each of the patient forums online? Many times, individuals may be part of more than one community which exists around a single topic of interest, ie those of us who are connected in the blogosphere AND on Facebook. Where do the edges blur?

What about the big disease organizations; are they part of our patient community? Why or why not? Are we part of their community? The interconnectedness of different social media platforms (ie blogs, Twitter, Facebook, etc) and the individuals who make virtual homes there has potential to be very powerful when spreading information and awareness.

I'm full of questions today, apparently.

What do you look for in a community? What do you expect from other members of that community? How would you want larger organizations to participate and reachout within patient communities? Or do you expect them to create the community and welcome us to join them?

These questions go beyond having MS, or RA, or depression, or any other disease or condition. So tell me. What are your thoughts on the subject of community? My thoughts won't settle long enough to move into words. J

Thanks,


The Free Dictionary online defines community as:
1. a. A group of people living in the same locality and under the same government.
b. The district or locality in which such a group lives.
2. a. A group of people having common interests: the scientific community; the international business community.
b. A group viewed as forming a distinct segment of society: the gay community; the community of color.
3. a. Similarity or identity: a community of interests.
b. Sharing, participation, and fellowship.
4. Society as a whole; the public.
5. Ecology
a. A group of plants and animals living and interacting with one another in a specific region under relatively similar environmental conditions.
b. The region occupied by a group of interacting organisms.

[Middle English communite, citizenry, from Old French, from Latin commnits, fellowship, from commnis, common; see common.]

Important Information for Bloggers who give Endorsements or Testimonials

For Release: 10/05/2009

FTC Publishes Final Guides Governing Endorsements, Testimonials
Changes Affect Testimonial Advertisements, Bloggers, Celebrity Endorsements

The Federal Trade Commission today announced that it has approved final revisions to the guidance it gives to advertisers on how to keep their endorsement and testimonial ads in line with the FTC Act.

The notice incorporates several changes to the FTC’s Guides Concerning the Use of Endorsements and Testimonials in Advertising, which address endorsements by consumers, experts, organizations, and celebrities, as well as the disclosure of important connections between advertisers and endorsers. The Guides were last updated in 1980.

Under the revised Guides, advertisements that feature a consumer and convey his or her experience with a product or service as typical when that is not the case will be required to clearly disclose the results that consumers can generally expect. In contrast to the 1980 version of the Guides – which allowed advertisers to describe unusual results in a testimonial as long as they included a disclaimer such as “results not typical” – the revised Guides no longer contain this safe harbor.

The revised Guides also add new examples to illustrate the long standing principle that “material connections” (sometimes payments or free products) between advertisers and endorsers – connections that consumers would not expect – must be disclosed. These examples address what constitutes an endorsement when the message is conveyed by bloggers or other “word-of-mouth” marketers. The revised Guides specify that while decisions will be reached on a case-by-case basis, the post of a blogger who receives cash or in-kind payment to review a product is considered an endorsement. Thus, bloggers who make an endorsement must disclose the material connections they share with the seller of the product or service. Likewise, if a company refers in an advertisement to the findings of a research organization that conducted research sponsored by the company, the advertisement must disclose the connection between the advertiser and the research organization. And a paid endorsement – like any other advertisement – is deceptive if it makes false or misleading claims.

Celebrity endorsers also are addressed in the revised Guides. While the 1980 Guides did not explicitly state that endorsers as well as advertisers could be liable under the FTC Act for statements they make in an endorsement, the revised Guides reflect Commission case law and clearly state that both advertisers and endorsers may be liable for false or unsubstantiated claims made in an endorsement – or for failure to disclose material connections between the advertiser and endorsers. The revised Guides also make it clear that celebrities have a duty to disclose their relationships with advertisers when making endorsements outside the context of traditional ads, such as on talk shows or in social media.

The Guides are administrative interpretations of the law intended to help advertisers comply with the Federal Trade Commission Act; they are not binding law themselves. In any law enforcement action challenging the allegedly deceptive use of testimonials or endorsements, the Commission would have the burden of proving that the challenged conduct violates the FTC Act.

The Commission vote approving issuance of the Federal Register notice detailing the changes was 4-0. The notice will be published in the Federal Register shortly, and is available now on the FTC’s Web site as a link to this press release. Copies also are available from the FTC’s Consumer Response Center, Room 130, 600 Pennsylvania Avenue, N.W., Washington, DC 20580.

The Federal Trade Commission works for consumers to prevent fraudulent, deceptive, and unfair business practices and to provide information to help spot, stop, and avoid them. To file a complaint in English or Spanish, visit the FTC’s online Complaint Assistant or call 1-877-FTC-HELP (1-877-382-4357). The FTC enters complaints into Consumer Sentinel, a secure, online database available to more than 1,700 civil and criminal law enforcement agencies in the U.S. and abroad. The FTC’s Web site provides free information on a variety of consumer topics.

MEDIA CONTACT:
Betsy Lordan
Office of Public Affairs

202-326-3707
STAFF CONTACT:
Richard Cleland
Bureau of Consumer Protection
202-326-3088
(FTC File No. P034520)
(endorsement testimonial guide.wpd)

Monday, October 5, 2009

Welcome New MS Bloggers to the Community

My New Life, With MS by Kaspar
My life is pretty candid and open. I am both forward and outspoken and I'm unsure as to why I would want to hide anything from anyone even understanding the possible consequences. Some would say I always offer TMI... but I've got one very short life to live. I was diagnosed 19 days ago [posted August 22]. Here's what I have so far: (read Genesis)

Lost Cogs by dreamcatcher
If I had to pick my worst multiple sclerosis symptom, it wouldn't be cognitive impairment, fatigue, walking like a drunk, or even the burning pain in my legs that welcomes me in the morning and snuggles with me at night. The worst symptom is without question the NOISE ...

Living with MS and PCOs by Desiree
I was diagnosed with Multiple Sclerosis in January of 2007 and it's been a learning experience ever since. Currently I'm experiencing my second flare-up this year and this one has been a bit rougher than the last. I take rebif injections three times a week as an attempt to control my flare-ups along with a variety of other pills. I'm also currently on metformin to treat poly cystic ovarian syndrome. I work full-time, go to school full-time and reside in a small rental house in Central New York with my husband, three cats and brindled mutt.

The Pursuit of Happiness by April Lusk
I am a 34 yr old Single mom of 4 teens, with the youngest being diagnosed with Autism. I was a EMT for 10+ years when I had to retire due to Multiple Sclerosis. I did however, get to go and help during Hurricane's Katrina & Rita!! Since I am unable to work, I go to school for Culinary/Baking (Taking a break from my BA of Bus. Admin & Accounting!). I give back to my community thru anything I can volunteer for!

Run Some More by Joe
For many people, completing a marathon is huge accomplishment, but Michigan native Joe Fairchild is running 3,400 miles across the entire United States. Along the way Joe will be raising money and awareness for Multiple Sclerosis.

Though covering 25-30 miles most days is a challenge, to Joe the journey is about much more than a physical feat. He will be making the journey alone, pushing all of his essentials—a tent, sleeping bag, clothes, food, water—in a modified baby stroller. “To me the run is a spiritual journey. I hope to discover more about myself while taking in the beauty of this great country.”

Friday, October 2, 2009

RA and Lupus

Is there an association between rheumatoid arthritis and systemic lupus erythematosus (lupus)? Can someone have both diseases or must he or she be diagnosed with only one? What are the challenges in addressing these questions and more?

From a recent article published in the journal Arthritis Research & Therapy, the average RA patient has 1.6 comorbidities and that number increases with the patient's age. There is increasing interest in the field of comorbidity (the existence of more than one disease in a person, usually independently of one another) and rheumatic diseases.

Incidence of Co-morbidity of RA and Lupus?

The Lupus Foundation of America states that the majority of people with lupus have lupus alone. However, between 5 and 30 percent of people with lupus report having overlap symptoms -- symptoms of more than one disease. The likelihood of a person with lupus also having an overlap disease is 15 percent, distributed as follows: Rheumatoid Arthritis (1%), Polymyositis-Dermatomyositis (2%), Mixed Connective Tissue Disease (3%), Scleroderma (4%), and Sjogren's syndrome (5%). There are at least 1.5 million Americans living with lupus, thus statistically approximately 15,000 may have both Lupus and RA.

Read this post in its entirety:

Can I have Rheumatoid Arthritis and Lupus?