Monday, January 31, 2011

Update Provided on CCSVI Research Progress

The National Multiple Sclerosis Society provides a progress report on the seven research projects being conducted on various aspects of Chronic Cerebrospinal Venous Insufficiency (CCSVI) with $2.4 million society funding.  This is like mid-term grades.  It is good to know how you are doing, but better to know that there is still plenty of time to get down to business before the year (or project) is over. 

(Yes, the music students have all been bemoaning the dreaded mid-term deadline of tests and grades at school.  That's why the phrase is on my mind.)

These seven research projects do not represent the ONLY research being conducted into CCSVI in the United States or Canada.  For information regarding additional research studies, including treatment trials, visit the CCSVI Alliance 'Clinical Trials in the US' webpage.  CCSVI Alliance is a non-profit organization which "promotes education and research about CCSVI and its relationship to Multiple Sclerosis (MS) by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals."

In addition to the press release/progress report reprinted below, CCSVI Alliance patient advisory board member and MS blogger we know as the Wheelchair Kamikaze, Marc Stecker was heard on NPR's Morning Edition show this morning - "Doctor Challenges Cause of MS and Treatment."

Research Teams Report Progress from First Six Months of 2-Year Projects Focusing on CCSVI and MS 

National MS Society, January 31, 2011 - Six-month progress reports from seven multi-disciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they have established rigorous protocols, are successfully recruiting participants, and are on-track to evaluate and deliver important data when the two-year projects are completed. All seven studies are two years in length but will be closely monitored while in progress in order to expedite clinical trials should the data show it is warranted. The studies were launched on July 1, 2010 with a more than $ 2.4 million commitment from the MS Society of Canada [$700,000] and the National MS Society (USA).

Most of the teams have received approval to begin their studies from the required Institutional Review Boards in the U.S. or the Research Ethics Board in Canada, a required first step established by regulatory authorities to protect human subjects involved in research projects. (Read more about steps involved in conducting clinical research.)

Already more than 200 people have undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology originally used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.

Owing to the significant interest in the MS community about CCSVI, we are providing 6-month updates rather than the more standard 12-month reporting cycle. Because the studies employ rigorous blinding and controls designed to attain objective and comprehensive data, the full results of the ongoing research will be available only after significantly more scans have been completed and evaluated. They will collectively involve more than 1300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls.

“We are pleased with the progress reported by the research teams we have funded,” advised Dr. Tim Coetzee, chief research officer at the National MS Society, “and look forward to providing as quickly as possible the understanding and answers these projects reveal on the relationship between CCSVI and the MS disease process.”

Jon Temme, senior vice-president of research and programs for the MS Society of Canada concurs, “The grants were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. It is very encouraging to see how effectively the work has advanced among all groups.”

Details: The funded investigators, which include an integration of both MS and vascular experts, report progress in establishing their teams, putting their protocols in place, recruiting participants and beginning their studies, as summarized below.
  • Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: Her team received Research Ethics Board approval in the fall and has begun enrolling participants and studying vein abnormalities in children and teenagers who have MS, and healthy controls of the same age, using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. The team’s ultrasound experts have received training in Dr. Zamboni’s original techniques. Read details of Dr. Banwell’s plan.
  • Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta: Her team received Research Ethics Board approval in the fall to begin recruiting a cross-section of people with MS compared to other neurological diseases and healthy volunteers. They also recruited two ultrasonography experts who have begun ultrasound scanning as originally used by Dr. Zamboni. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3T MRI machine (twice as strong as standard clinical MRI) that will be used to perform MR venography scans to compare against the ultrasound tests. Read details of Dr. Costello's plans.
  • Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: His team will be using MR venography and ultrasound techniques originally used by Dr. Zamboni to investigate CCSVI in people with early and later MS, controls with other conditions and healthy volunteers. A study coordinator is developing a recruitment list and an ultrasound expert has been hired and is slated to receive training in the Zamboni techniques. Dr. Field has been negotiating with the Institutional Review Board on issues related to study details and informed consent, and hopes to have these issues resolved to obtain IRB approval in the coming weeks so that scanning can begin. Read details of Dr. Field’s plans.
  • Dr. Robert Fox, Cleveland Clinic, Cleveland: His team has received Institutional Review Board approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups, and recruitment is ongoing. Two ultrasound researchers underwent training in the technique originally used by Dr. Zamboni, and the team has obtained a new ultrasound machine previously used in other CCSVI studies. The ultrasound team found several aspects of the published methodology ambiguous, and they have standardized the protocol and analysis to achieve consistent results. To share ideas and solutions to these methodological challenges, Dr. Fox’s team has submitted an abstract for consideration for presentation at the American Academy of Neurology’s annual meeting in April. Read details of Dr. Fox’s plans.
  • Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: His team obtained Research Ethics Board approval in the winter and at once began the first phase of scanning using MR venography in people without MS, which will be used to compare with various scans in people with MS. Dr. Torres’s team has overcome several obstacles including negotiating with the Research Ethics Board over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. Team members are slated to be trained using the ultrasound techniques originally used by Dr. Zamboni, and they are on track recruiting more participants for the study. Read details of Dr. Torres' plans.
  • Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: The teams at both sites have received Research Ethics Board approval and have begun to recruit and scan participants. Their ultrasound technologists were trained by Dr. Zamboni, and they are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. The radiologists on the teams of Drs. Traboulsee and Knox are meeting in February 2011 to ensure the consistency of their protocols across sites. The teams are on target for accrual of recruits and completion of the study. Read details of this team's plans.
  • Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: His team applied in advance and obtained Institutional Review Board approval in the spring, and the team’s neurosonographer has received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which includes people with different types of MS, people with other conditions, and people with no known health problems. One obstacle Dr. Wolinsky’s team is addressing is the difficulty of recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. Read details of Dr. Wolinsky’s plans.
Going Forward: These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The grants were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process.

The teams are now established and scanning procedures are underway at all but one of the study sites. Researchers have demonstrated a clear willingness to share technical advice and information so that projects can move forward as smoothly as possible. At this six-month milepost they are making significant progress on plans for these two-year studies.

The next update on the work of the seven grantees will be reported in six months.

Saturday, January 29, 2011

What is the Romberg Test?

During each visit with the neurologist, I get to go through the steps of testing balance and gait.  The term gait refers to how you walk.  It’s fun getting to show off my abilities on any given day.  However, there is one particular neurological test which always gives me a chuckle.  It is the Romberg Test.

"What is the Romberg Test?"

The Romberg Test is a neurological test which detects poor balance and defects in proprioception.  The test involves standing with your feet together and closing your eyes.  The doctor will observe how you are able to maintain your balance and an upright posture.  The doctor may even push you slightly to see whether you are able to compensate and maintain an upright posture.

The very first time I underwent this testing, I thought that my neurologist had shoved me in the middle of the back.  He quickly told me to open my eyes.  My mother, who had come with me to the visit, told me later that he had caught me as I was quickly falling backwards.  I had no idea.  I had demonstrated a positive Romberg sign.

During the past couple of years, I don’t even need to close my eyes when I’m standing with my feet together before I begin to sway and wobble.  I can’t feel my feet which makes feeling their positioning more difficult.  As a result, I hardly ever stand with my feet together and I definitely don’t close my eyes in the shower.  My physical therapist even has a nifty testing device which can map the amount of swaying I do under different circumstances.

Read this post in its entirety:

MS Signs vs. Symptoms: What is the Romberg Test?

Thursday, January 27, 2011

Removing the Synovium in an Inflammed RA Joint

In the previous post, we discussed different types of surgeries which are used in patients with rheumatoid arthritis.  This week I’d like to talk more about surgeries involving soft-tissue, specifically synovectomy, tendon repair, and carpal tunnel release.

What is a Synovectomy?

The synonium is a membrane surrounded a joint, usually only one or two cell layers thick, which produces synovial fluid to help lubricate the joint.  In rheumatoid arthritis, the synovium becomes inflamed and may grow excessively, producing too much synovial fluid containing an enzyme that can eat away at the cartilage on the joint surface.  Disease-modifying anti-rheumatic drugs (DMARDs) are used to control the abnormal growth of synovium.

If DMARDs do not work, a patient’s rheumatologist may suggest steroid injections into a joint or a needle aspiration of excess synovial fluid.  If these strategies do not work, then the patient may be referred to an orthopedic surgeon to discuss the removal of the synovium.  This surgery is called a synovectomy and can be done as an open surgical procedure or through arthroscopic surgery.

Synovectomies are performed are knees, elbows, wrists, finger joints, and hips.  The surgery typically produces better results when the patient’s cartilage has not been eroded, thus it is recommended for patients who are in earlier stages of their disease.  Note that over time the synovium may grow back and require repeat surgery.

Read this post in its entirety:

Soft-Tissue Surgery in Rheumatoid Arthritis: Synovectomy, Tendon Repair, Carpal Tunnel Release

Tuesday, January 25, 2011

"I want to play by my lonely."

That's what my youngest nephew said to me a few days after Christmas.  The house had been full of activity and "J" had kept up with his two older brothers in all of the festivities and rough and tumbles.  I had managed to keep up with each of them (mostly).

"J" gave up his big boy bed so that Aunt Lisa could stay over during the week.  Each morning I had awakened before the boys, except for the last day.

"It's morning time!!" said J as I lingered in bed without an alarm going off.  He was my alarm clock that morning, however I played 'dead' to get a few more winks.

When I finally did get up (at around the late hour of 9am, lol) and went to take a shower, J took back his bedroom to play.  I came back after the shower to gather a few things to take downstairs.

"I want to play by my lonely," says J. 

Wow, a little boy of my own heart.  Of course he has two older brothers and probably cherishes the few moments he might get to play "by his lonely" without interference or competition.

I love my alone time.  I need my alone time.  If I don't get some every week, I'm a cranky mess.  (In other words, watch out!!)

Solitude is a beautiful thing when you know that you will never truly be lonely.  Having the security to allow yourself to enjoy loneliness, when it really is just the opposite, has got to be one of life's little blessings.

So I hope that you are able to enjoy playing "by your lonely" too.

Sunday, January 23, 2011

What is the Hoffmann Reflex?

During one of my early visits with the neurologist, he conducted a test of which I didn’t understand the significance.  He’d already asked me to squeeze his fingers in my fists - “oh come on, squeeze harder” - and now he is ‘thumping’ my fingers.

“What is the neurologist looking for when he is tapping my finger?”

The neurologist is looking to see if there is a finger flexor response.  The finger flexor response is demonstrated by a sudden flexing of the thumb and/or index finger.  There are two ways to cause this response: 
     * The doctor snaps or flicks the nail of the middle or 4th finger.  A positive finger flexor response elicited in this manner is known as the Hoffmann reflex or sign.
     * The doctor holds the middle finger while partially flexing it between his/her finger and thumb, then taps or flicks the underside of that finger.  A positive finger flexor response elicited in this manner is known as the Trömner sign.

To view two videos of a positive Hoffmann sign, visit the website of the University of Washington Neurological Surgery Spine Center.

“What causes the thumb to flex?”

The finger flexor response (Hoffmann relex or Trömner sign) is somewhat similar to the Babinski sign in that it is suggestive of a lesion or impingement along the corticospinal track.

Read this post in its entirety:

MS Signs vs. Symptoms: What is the Hoffmann Reflex?

Friday, January 21, 2011

European Medicines Agency recommends Gilenya (fingolimod), but rejects Fampyra (fampridine) and Movectro (cladribine)

Today was a big day for news of new Multiple Sclerosis medications in Europe.

While online publications have been excited about the recommendation by the American Academy of Neurology that plasmapheresis (plasma exchange) can be used to treat MS relapses which do not respond to high-dose steroids (something which I was under the impression neurologists already had in their tool belt), the European Medicines Agency's or EMA Committee for Medicinal Products for Human Use (CMPH) has made decisions regarding the newer pills designed for use in MS treatment (both disease-modifying and symptomatic).


The Committee adopted a positive opinion recommending the grant of marketing authority for Novartis' drug Gilenya (fingolimod).  Gilenya is a an oral (pill) disease-modifying drug which received FDA approval in September 2010.  Patients in the US have more recently been able to gain access to the drug.  In the summary of opinion, the Committee mentions that the benefits with Gilenya are its ability in reducing the number of relapses in patients with relapsing-remitting multiple sclerosis.

The most common side effects (seen in more than 1 patient in 10) are influenza viral infections, headache, diarrhoea, back pain, cough and elevated liver enzyme (known as ALT). Other common side effects (seen in between 1 and 10 patients in 100) that could be or could become serious are herpes virus infection (shingles or herpes zoster), lymphopenia, leucopenia (reduced white blood cells), bradycardia (slow heartbeat), atrioventricular block (irregular heart rhythm), bronchitis and gastroenteritis.

FAMPYRA/Biogen Idec

A negative opinion was delivered to Biogen Idec regarding Fampyra (fampridine) which is marketed in the United States as Ampyra (dalfampridine) by Acorda Therapeutics.  The Committee recommends that marketing authority should not be granted to Biogen for Fampyra, which is intended to be used to improve the walking ability of adult patients with multiple sclerosis.  The Committee was not convinced that Fampyra’s small effect on the walking speed was a meaningful benefit for patients. The effect on speed could not be linked to meaningful improvements such as better coordination, balance or stamina or increased range of action.

The Committee was of the view that the medicine’s uncertain benefits did not outweigh its side effects which included pain, dizziness, paraesthesia (unusual sensations like pins and needles) and problems with balance, as well as symptoms similar to those of multiple sclerosis that could impair the patient’s ability to walk. The Committee also noted the lack of adequate long-term data on the medicine’s benefits and safety as well as data on some groups of patients, such as the elderly and patients with epilepsy or heart problems.

As of September 30, 2010, Ampyra has been prescribed to 31,000 patients with MS in the US since it's FDA approval on January 22, 2010 and commercial launch in March 1, 2010.  Biogen Idec plans to appeal the Committee's decision.  Biogen owns the rights to market Fampyra/Ampyra outside of the United States.


Merck/Serono received greater bad news in that the Committee confirmed its previous negative opinion and adopted a final negative opinion regarding Movectro (cladribine).  Serono shall not be granted the authority to market Movectro (cladribine) as a disease-modifying therapy in relapsing remitting multiple sclerosis.

Previously, Merck/Serono had presented the results of one main study that compared Movectro with placebo (a dummy treatment) in 1,326 patients with relapsing-remitting MS.  The Committee was concerned that an increased number of patients with cancer were observed patients treated with Movectro compared to the control group in the clinical trial. The Committee also noted that the benefits and the most appropriate dosage for treatment had not been fully established in patients who were expected to use the medicine. Therefore, the Committee is of the opinion that the benefits of Movectro do not outweigh its risks.

According to Reuters, Merck said it remained committed to completing ongoing clinical trials with cladribine tablets. It can re-apply for approval of the tablets in 2012 at the earliest, when trial results are due.

I personally have no opinion regarding any of these medications for my own use.  I am highly unlikely to use any of them due to my history of methotrexate use (for fingolimod and cladribine) and due to insurance coverage for Ampyra (dalfampridine).

However, I am disappointed that these treatment options will not be made available to patients for whom they may benefit.  I know that many MS patients in Europe have been eager to try Fampyra as we have received many questions at HealthCentral asking when it will be made available.  Those patients will have to wait a while longer now.

More information about the Committee's decisions is available in separate question-and-answer documents on the Agency's website.  PDF's can be found in the right-hand sidebar of the website.

UPDATE: A good compilation of information and links to relevant press releases can be found at FiercePharma.  Read MS drugs get yeas, nays and price increases.

UPDATE #2: Biogen announces updated Tysabri/PML statistics.  The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011.  The number of deaths holds at 16 patients.  Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.

Disclosure: The website for which I provide video and written blogs,, is sponsored by EMD Serono.

Thursday, January 20, 2011

Carnival of MS Bloggers #80

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

Perspective, Healthcare Policy, and Friendships

by Jenna of Me, My MS and I

I’ve come across many instances of describing people with MS as ‘MS sufferers’ recently. Everyone prefers their own terms, as it were, or none at all. It thoroughly annoys me that others take it upon themselves to decide I’m a ‘sufferer’ and to describe me as such. I’m not planning on being up for martyrdom, so no ‘suffering’ with quiet dignity for me, thanks! I plan to grow old disgracefully and have a whale of a time doing it!! I’m a person that happens to have MS (and it’s *my* MS thank you very much, so hands off with the descriptions and names!!), not MS that just happens to have a person attached. We’re people, not a condition. Consider the mental health campaign slogan: see me, not a label.

I prefer to have a riotous time during the good times and enjoy them thoroughly, and although the bad times aren’t great, I decided to kick my MS in the arse and fight it every step of the way (even if it means throwing sand in its eyes!), as opposed to ‘suffering.’ Suffering implies a passivity that no MSers whom I know subscribe to. We’re all fab, super folk who are determined and stubborn and fight our MS every step of the way. These are our bodies, it’s our MS, and we decide how we describe ourselves.

Perhaps some people with MS don’t mind at all being described as a ‘sufferer’ and that’s their choice which they make and are happy with. Everyone is entitled to their own opinion, but before the next time you decide to call someone with MS a ‘sufferer,’ consider if you have the right to – are we really ‘sufferers’ and what gives you the right to decide if we are?

from Diane J Standiford of A Stellarlife

It always amazes me how well you handle your multiple sclerosis. Oh, sure, you may have cried, been freaked out, asked, "WHY ME?" but after the smoke cleared, you started living with MS on your own terms.

You started a blog. You wrote your feelings and struggles about your new life, sharing with the world very private observations and fears. Then you read other blogs and bonded with strangers who lifted your spirits because you found you were not alone with MS. Strangers became friends and daily visitors.

Your canes or walkers, scooters or wheelchairs, became pals. Pals you decorated, bought accessories for, heck, they became a part of the family! Courage grew in your very soul. Needles-peedles! You found you could inject yourself and eat better, exercise, find new doctors and learn new words. What was once a hideous burden, became a tedious inconvenience.

Most miraculously, you found laughter in the struggles of MS. Would you have found some of the bodily mishaps funny that now you do? Laughter is the best medicine and every day you use it you are certain to feel better. Laugh and the MS World laughs with you.

Most gallantly, you never stop looking for a cure, you fight for your health care rights, you challenge doctors and scientists to "step it up." From your walkers you call congress and organizations urging them to fight with you. Using your damaged brain you weed out MS scams, and plan ways to keep medical experts on your side.

So hats off to all of you! That hotel on Boardwalk is YOURS! And for those of you just diagnosed with MS? Well, very soon you too will live on YOUR own terms. Life is but a game, and we are just the players. Gather your family, friends and loved ones around the game board and remind yourself every day that life is short, so drop the "Get out of Jail Free" card and throw the dice!

from Michael Gerber of Perspective is Everything

from Stuff Sick People Have to Put Up With

Yes. You read that right. No, that’s not a typo or a mistake.

My medication alone is priced at between $2,089 and $2,563 per month.
I earn between $15,000 and $23,000 per year.

Obviously you can see the problem here. The total out-of-pocket cost of my medication alone exceeds my entire annual income by up to $16,000.

I often ask people: “What does ‘being sick’ mean to you?” I ask this question because I am curious as to how people will respond. Most of the time, people who do not have any kind of chronic illness can only conceive of “illness” in a few ways:

A. Short-term, minor illnesses, like colds, flus, and mild bacterial infections, that either go away untreated or go away with a relatively inexpensive antibiotic

B. Acute, catastrophic illnesses like cancer that can potentially bankrupt a person, but that are treatable and “curable” (for the most part) with, say, chemo.


C. Acute, catastrophic accidents that result in broken bones or other surgical needs—-again, can potentially bankrupt a person, but are “fixable.”

From what I’ve seen, unless someone has direct personal experience with chronic illness (either themselves or an immediate family member), they really can’t conceive of it.

“Illness,” for the vast majority of the population, is transient. It’s temporary. It’s that nasty cold you have for 2 weeks that passes. At worst maybe a broken bone or cancer: but hey, with a surgery and a cast or some chemo, you’re set, right? Life goes on. You get “better.” You’re cured. Everything returns to normal.

I think the reason why a large segment of the population actually thinks it’s OK to deny health coverage to people is because they have zero direct experience with a chronic, incurable illness.

I’ve been sick for nearly four years. I am never getting better.

Let that sink in for a minute, if possible. I’ve been sick not for 4 days, or 4 weeks, or 4 months, but 4 years. I will never, ever get better.

It is difficult enough to get through each day, to work and be productive, to manage all of my responsibilities while constantly and unrelentingly sick, without also having to worry about stuff like: “Where on earth will I get an extra $30,000 to pay for my medication when my health insurance policy expires next summer?”

For those of us living with chronic illnesses, every single day is a struggle. I don’t talk about it much, but I am constantly in pain. I constantly feel sick. I remember, before I got MS, how I used to wake up and it was just a question of: “Do I feel sick or well today?” Most days, of course, a person feels well. Then you go about your business and don’t even think about your body, really.

For almost four years the question I’ve asked myself upon waking has not been: “Do I feel sick or well today?” but rather: “How sick do I feel today?”

There is no more “feeling well.” I will never again “feel well.” There will be days when I feel less sick or more sick, but there is no more “well.” It doesn’t exist.

I can live with this illness, and what it’s doing to me physically, and what it will continue to do. I understand that I probably won’t be able to walk within 5-10 years. It’s OK with me that I already have lots of permanent neurological damage. I can bear it. The pain, I can handle it.

What I can’t handle is, on top of everything else, not knowing how I will get health care, or afford a health insurance policy, or afford a medication that costs more than my entire annual salary. I think until you’ve lived with that kind of situation or witnessed it firsthand, it’s fairly easy to dismiss the needs of people who really do need health care. It’s fairly easy to be callous, because your only point of reference for “illness” is perhaps a cold, or the flu.

This is universes away from the cold or a flu.

The illness I can bear. Not having access to health care and medication, I cannot bear. I really can’t. Please don’t ask me to.

from Matt's Multiple Sclerosis Blog

PhotobucketI have always been one to keep a few close friends in my life rather then surround myself in a huge social crowd. It's been hard for me lately not because MS has destroyed my friendships but because MS has allowed me to see people more clearly, to see them for who they really are, to “see their true colors” and unfortunately, I have not liked what I have seen so far... This has led to several of my good friendships falling apart.

Every incident has been different in it's own ways but fundamentally, when you break each situation down, all my friendships have ended for the same basic reason. I have been let down in some way shape or form as a friend. I have always gone above and beyond for my close friends, the people I care about, and the people I love. I have always put them all before myself, and truly tried to be there for them how ever I could. I slowly began to realize in the last few months that none of my friends were really willing to do the same for me. I'm not going to bring up any particular incidents because I am not trying to put anyone on the spot or bring my personal affairs into the matter but I can truly say that I have busted my ass for several of my friends who in return couldn't even show a little effort in trying to be there for me.

I try my best not to hold grudges but sometimes resentment is hard to shed, sometimes it's hard to forget the past and not be bitter. I don't let it anger me anymore because that is a waste of my emotional resources but to be bitter doesn't really take a toll on my emotional well being. Though I guess you could argue that this has caused me to grow cold and I know it, I can feel it, but I can't help it. Why should I care for those who have proven to not truly care for me? For those who have found it so easy to just walk away?

I have just a couple true friends left who I know are genuine but at this point I feel no desire to reconstruct old friendships because I don't know if I believe that people ever really change. It would take a lot for someone to prove to me they have changed, that they want to truly be my friend, but at this point, “sorry” won't do. “Sorry” has lost all it's value to me. Anyone can say it but not everyone can mean it let alone prove that they mean it.

When writing on my blog I try my best to maintain a positive attitude but I can't hide the fact that at this point in my life, I have a very grim view of humanity and it's not because of my MS. MS might have aided some of my negative views on humanity but for the most part it's my life experiences and social experiences that have lead me to think the way I think and feel the way I feel. Knowledge is power but knowledge can also be a painful burden. Maybe I have just yet to mature enough to know how to properly process and handle the knowledge I have obtained, I don't know, I just know that I am growing cold and calloused and I have no idea what it will take to change that or how long it will take for that to happen.

“Ignorance is Bliss”

A true statement indeed, but ignorance is just the path of least resistance, the easy way out, and knowing myself and my pride, I know that I can't take that route in life. I'll eventually have to learn to deal with knowledge, reality, the world, humanity, people, all of it. I'm not taking the easy way out, I will endure and I will overcome.

This concludes the 80th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 3, 2011. 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, February 1, 2011.

Thank you.

Comments for this post.

Tuesday, January 18, 2011

How to Manage Work and RA

Several months ago, HealthCentral asked me to make some videos related to living with rheumatoid arthritis.  A camera man came to my music studio and we recorded 10 videos in under 2 hours.  Looking back on the videos, I now remember just how extremely hot my studio was that day since we needed to turn the air conditioning and fans off to avoid sound pollution.  Wow, look at my radiant face.  LOL.

Interesting. The video looks a little jerky here on the blog, but it looked smooth on the website.

Monday, January 17, 2011

The Babinski Sign Explained

While I’m sitting on the exam table with my legs dangling, the neurologist reaches for a metal object.  He’s already poked me several times with the safety pin so I’m wondering what he plans to do with this larger pointy thing.  He grasps my foot and scraps the object on the bottom of my foot along the outermost side and under the toes.  My big toe jumps and the other toes look like they are trying to get away from the torture device.  I have just demonstrated a positive Babinski sign.

During a standard neurological exam, the doctor will test many reflexes, or involuntary responses to stimuli.  Much of that is done with a rubber mallet as the doctor taps various tendons and measures the response.  However not all reflex tests involve the rubber mallet.  One very important reflex test involves scraping the bottom of the foot.

“When the doctor scraps the bottom of my feet, what is he looking for?”

A normal response in anybody older than two years of age would be the big toe flexing downward (toward the sole of the foot) or nothing.  If your big toe jumps upward or extends (even if for a very brief second) and/or your toes fan out, this would be a “positive” extensor plantar response or the Babinski sign.

Read this post in its entirety:

MS Signs vs. Symptoms: What is the Babinski Sign?

Wednesday, January 12, 2011

Your Brain on Improv - Creative Process Seen on fMRI

This is a fascinating presentation of a project in which musicians (a jazz pianist and a rapper) undergo different activities while in a functional MRI machine.  It can be seen which areas of the brain are engaged (or not) while the musician performs something memorized versus something improvised.  Enjoy.

Charles Limb is a surgeon who studies creativity.  Currently on faculty at Johns Hopkins University, Peabody School of Music.  Previously at National Institutes of Health.

Tuesday, January 11, 2011

What is L'Hermitte's Sign?

The neurologist asks me to bend my head forward and immediately I feel a shock of sensation travel down my arms into my fingers.  It’s kind of a vibration, buzzing, or tingling more than a shooting pain.  I have just shown a positive L’Hermitte's sign.

The extra buzzing I felt is called a dysesthesia since the unusual sensation was provoked by bending my head forward, in contrast to a paresthesia which describes spontaneous tingling, buzzing, partial numbness, sharp pains, or electrical shocks.  I get those too.

Not everybody experiences the L’Hermitte's symptom in the same way.  For some patients, it is described as an intense electric shock which feels like you’ve just shoved a finger or toe into an electrical outlet.  For some, it may just be a very subtle tingling in the fingers, legs, or toes.  Or for others, the wave of sensation can also travel down the truck or upwards to the head.

I have been asked, “Is L’Hermitte's a sign or a symptom?”

Read this post in its entirety:

Signs vs. Symptoms: What is L'Hermitte's Sign?

Monday, January 10, 2011

Types of RA-Related Surgeries

Although I have rheumatoid arthritis and I know what can possibly happen to my body now or in the future, I’d still like to hide my head in the sand as much as anybody.  However, I can’t do that.  I have a responsibility to research topics and provide information for the community’s benefit as well as my own.

You may recall that even before I saw a rheumatologist and received the official diagnosis of RA, I was consulting a hand surgeon about getting steroid injections in my wrists and possibly facing carpal tunnel release surgery in the future.  I was terrified and still shake inside when I think of anybody cutting open such a delicate area as a wrist, especially MY wrists.

My story didn’t end up with surgery, for which I am thankful, but it did end up with facing a life with RA.  With the powerful drugs which are more commonly used nowadays with patients earlier in their disease course, fewer and fewer surgeries are necessary.  A study released last year noted that the rate of surgeries in RA patients has declined dramatically in the past 25 years.  That’s encouraging news!

Read this post in its entirety:

What Types of Surgery Are Used in Rheumatoid Arthritis?

Saturday, January 8, 2011

The Flu Shot Might Not Have Been Effective After Rituxan

Below is a news story which was discussed a year ago.  I didn't really pay that much attention to it then because my rheumatologist insisted that I get my vaccines before I started Rituxan.

Then this year with the knowledge that the flu vaccine might not be effective in the months following a Rituxan infusion, I waited for four months (following the May/June infusions) to get mine in October.

It was odd.  The flu vaccine felt like nothing was really even in the shot.  My body didn't seem to react to it at all.  Not even a stuffy nose and for previous years, I always seemed to get a little sick following the flu shot.  Not this year.

Well, now I think that I am an example of the Rituxan patients in the study who didn't gain full benefit of the flu shot.  I was at the doctor's office yesterday with a 101.3 temperature after the "train" ran me over and came back to punch me a few times for good measure.

Official diagnosis - the flu.  My doctor offered some antivirals which I said that I would love to have.  So Tamiflu is on board right now as my immune system needs the help.

I'm not sure who exactly spread this little bug to me.  At first I was going to blame Rob when it seemed I might be getting sick as he had a nasty cold last week.  But then, it may be that one of my students passed this onto me this past Monday or Tuesday.  I do recall at least one specific individual who was obviously "drippy."

My doctor did say that something was going around in our area which involved high fevers for a few days.  I think that my fever (which showed up Wednesday night) finally broke last night as I sweated through my pj's and sheets.  [Update: I'm still achieving high temps on Sunday.  This is a doosy of a bug.]

You know how we talk about MS acting up with our body temps go up, well I definitely felt it yesterday for sure.  That is also one reason I went to the doctor - I could hardly walk straight or trust the strength in my arms.  I couldn't think straight either.

At least my head is clear today.  I'm hoping that we caught this early enough that the Tamiflu will help.  In the meantime, I'm trying to down lots of liquids which is hard to do when I don't feel thirsty.

I hope that everybody else is avoiding the flu this year.  Stay healthy.

Efficacy of Flu Vaccine Drastically Reduced for RA Patients Treated With Rituximab

ScienceDaily (Jan. 7, 2010) — Rheumatoid arthritis (RA) patients are partially protected by the influenza vaccine 6-10 months after treatment with rituximab. Researchers determined that while the flu vaccine is safe, it is ineffective for RA patients in the first 6 months following rituximab treatment. Previous influenza vaccination in rituximab-treated patients does increase pre- and post-vaccination titers, providing some defense to influenza strains. RA activity was not influenced by administration of the flu vaccine.

Complete findings of this study are available in the January 2010 issue of Arthritis & Rheumatism, a journal published by Wiley-Blackwell on behalf of the American College of Rheumatology.

RA, a common autoimmune disease, affects 4.6 million individuals worldwide and more than half of those diagnosed are woman, according to a 2000 report on global incidence by the World Health Organization (WHO). Patients with RA are immunocompromised, meaning their immune systems do not function normally, putting them at increased risk of infection. Due to a compromised immune system, doctors advise RA patients to get vaccinated each year against influenza including the new H1N1 virus.

Sander van Assen, M.D. and colleagues from the University Medical Center Groningen in The Netherlands conducted the largest study to date of the effectiveness of the flu vaccine in RA patients using rituximab. Three groups of patients were enrolled in the study: 23 RA patients using rituximab, 20 RA patients taking methotrexate (MTX), and 29 healthy individuals. Those patients taking rituximab were split into two groups with 11 who received the influenza vaccine 4-8 weeks after treatment with rituximab (early rituximab subgroup), and 12 individuals who were given the flu shot 6-10 months post-treatment with the drug (late rituximab subgroup). Influenza vaccines were administered intramuscularly between October 2007 and January 2008.

Researchers tested geometric mean titers (GMTs) for each group and found they significantly increased for all influenza strains in the MTX-treated group and in healthy controls, but for none of the influenza strains in the rituximab-treated group. In the late rituximab subgroup, a rise in GMT was noted for the A/H3N2 and seasonal A/H1N1 flu strains indicating some recovery of an immune response 6-10 months after treatment by rituximab. Also less rituximab-treated patients reached levels of antibodies needed for protection against influenza for the A/H3N2 and seasonal A/H1N1 when compared with MTX-treated patients, and for the seasonal A/H1N1 when compared with healthy individuals.

Results further showed that healthy individuals vaccinated the year before showed higher baseline GMT for the A/H3N2 strain than unvaccinated health controls. In the MTX group, higher baseline antibodies were noted for the seasonal A/H1N1 and B strains in previously vaccinated patients compared with unvaccinated subjects. For the Rituximab group, patients previously vaccinated not only had a higher baseline GMT, but also a higher post-vaccination GMT for the seasonal A/H1N1 than patients who were not vaccinated the prior year.

The safety of the flu vaccine was also tested by researchers and found to be safe. There were no differences noted between the 3 groups in the occurrence of side effects from the vaccination. Researchers determined that RA activity was not influenced by the flu vaccine and used the disease activity (DAS28) score prior to vaccination and at 7 and 28 post-vaccination to assess RA activity in patients in the MTX and rituximab groups.

"Individuals who have compromised immune systems, such as with RA, are at risk for complications from contracting the flu virus," said Dr. van Assen. "We recommend yearly influenza vaccination for all RA patients and preemptive vaccination for flu should be considered by those patients who start rituximab treatment."

Journal Reference:
  1. van Assen et al. Humoral responses after influenza vaccination are severely reduced in patients with rheumatoid arthritis treated with rituximab. Arthritis & Rheumatism, 2010; 62 (1): 75 DOI: 10.1002/art.25033

Wiley-Blackwell (2010, January 7). Efficacy of flu vaccine drastically reduced for RA patients treated with rituximab. ScienceDaily. Retrieved January 8, 2011, from­ /releases/2010/01/100106095044.htm

Thursday, January 6, 2011

Carnival of MS Bloggers #79

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

Blessings, Honor, Friendships, and Self-Awareness

by Laura of Shine the Divine

the dark of night
I offer bright blessings to all
may we each open our hearts a little wider
 absorbing the love and peace that surrounds us
illuminating any darkness we feel
saturating us with
Spirit's sacred

may the returning light of winter
continuously sustain us, 
you, me, our beloveds,
all beings beyond
time and space

by Mary at Travelogue for the Universe
For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.

I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
Assessing clients

And helping them access personal care.

The clinic called and my heart always skips a beat when they call me

Back to my other reality....

This is YOUR life, not some other sufferer.

They wanted to invite me to a tribute to Dr Panitch.

I was on the “a” list.

I looked around, was there anyone looking at me?

Did anyone see? Hear?

I wanted to be polite, respectful,

I wanted to say, Yes.

My schedule flashing in my head.

How could I do that, I thought.
It is for the MS society.

The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.

But it is for Dr Panitch, I thought,
A lifetime achievement award.

No, I said, so plainly, No.

I am honored (and I was sincerely),

But I cannot do it.

I lived in two worlds,

The Neuro Nurse and the Neuro patient.

My friends, coworkers from 30 years ago would be there,

as health care professionals.

How would I fit in?

My world, a subset of both nurse and patient.

Hearing he is gone from our material world,

I am relieved I was not there,

That my memories can be of him standing in the hallway,

Trying to peek at my progress on his study meds,

Briefly making eye contact, I smiled at him,

Trying to say what he has done for me is appreciated.

He has bought me some time,

He has given me expensive cutting edge treatment I would have otherwise gone without,

He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”


He meant every word.

by Herrad of Access Denied

Giorno Di Mercato, 1976
Expressionist Art.

The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.

That is really what the internet is all about, simple and straightforward communication and participation.

Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.

I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.

My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.

My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.

In the 4 years since I started blogging I have made many friendships and received and given alot of support.

I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.

When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.

This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.

I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.

It enables me to communicate with others around the world, even when I could not leave my bed for two years.

This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.

Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.

I communicate regularly with people I have never, and sadly, will never meet, except online.

The internet has enabled me to communicate with others and be part of the world.

That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.

It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.

by Joan of A Short in the Cord

I'm going into my fourth year of "early retirement" due to disability.  As is my custom, I am reviewing lessons learned from last year.

The most important lesson learned is that I should not plan to have the same level of energy that I had before disability.  Last year, there were too many times when I believed that I was normal and had the same energy level that I had before.  So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion.   "What happened?"  I would whine.  Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.

But last year, I lost sight of my authentic self.  I lost sight of the reason for my disability.  This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise."   Bullpoop.  I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days.   I am not using them as role models any more.   I will be my own authority and not succumb to peer pressure.

This next year, I pledge to do less.  I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything.  I pledge to give serious thoughts to my priorities.   And I AM prepared to deal with the disappointments - mine and others.

Just thought you should know this now so that you will be prepared for a different year, too.

Happy New Year!

This concludes the 79th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 20, 2011. 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, January 18, 2011.

Thank you.

Comments for this post.

Tuesday, January 4, 2011

A Year of Weight Tracking

If you would like to catch up on my past year watching (more closely) what I eat and losing weight in the process, check out my year in review post on  Looking back at my previous posts is like reading a public diary of sorts.  Educational and enlightening.  Here's hoping that 2011 is even more successful.

(No resolutions, however.  I don't do them.)

Sunday, January 2, 2011

Please Welcome Bloggers to the MS Blogosphere

Many, many new bloggers and blogs have surfaced in the previous year.   I have just discovered many of these blogs in the past month, listed below in no particular order.

Please welcome these bloggers to the wider MS Blogging Community.  Each of these blogs have been added to the massive MS Blogroll.

Happy Blogging in the New Year!!