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Carnival of MS Bloggers #54

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

Living a Normal MS Life and Cognitive Reserve

PE Class, Wildwood Flower, and Buttons
by Kmilyun at Bifurcate in the Road

Augh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.

Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!

First off I could take paragraphs to go into all the things I can no longer do. Or pontificating on all the stuff you can do and I can not or things I can do and you can not. Blah blah blah it is all lip service no? (in this case keyboard hitting).

Seriously, I can not be the only person with MS that finds it highly annoying to read about some great and wonderful accomplishment someone with MS has managed. That really does not cheer me up or make me strive to reach for the the stars. And it has the rebound effect (or is it affect?) of the inevitable comments from family – gee they climbed a mountain with MS so what is the big deal about not wanting to go camping where there is no running water and the closest restroom is 10 campsites down. Obviously you should be able to do that it is not like climbing a mountain you know!

Then again should I really feel bad and guilty or be berated because I can still drive, or make it up the stairs? Is not my personal perspective of suffering good enough. I somehow do not qualify? I have come around to the conclusion/belief that each and every person who overcomes any disability whether judged big or small is busy climbing their own mountains. And these mountains can be akin to pole vaulting over mouse turds to raising a truck over ones head. They all count.

And the above being the lead in to why I really like my adaptive PE class. It is a diverse group that gathers four days a week for an hour in the short bus trailer. I have yet to hear, see, or sense from anyone in the class that someone is better or worse or crazier or sicker than someone else. It is what it is. People who can’t talk use those boxes to communicate, the blind, the wheelchair bound, the mentally disabled, the goofs like me – we all just – well are.

It is the first place I have been with people who are not close friends that when my brain has gone south and it appears I took a stupid pill where I did not feel stupid.

Moving on without a segue into the next topic – I have decided to learn to play wildwood flower on the dulcimer. I have listened to a few renditions of the song. My favorite is June Carters last recording of it. I think I have figured out the notes – well a few might be missing – but I will see. It is not easy to find TAB notation for the old style noter and drone playing. The ones I have found on the net are for chording and finger picking. Big attempt for me as I still have problems with Go Tell Aunt Rhodie LOL But I am gonna give it a try.

Rush hour traffic here in Sacramento is the pits. I really dislike driving in it anymore. But the shop where the Luthier can put the strap buttons on my dulcimers does not even get in till 4:30pm. I am getting smarter here now so give some credit, I know that it would be a bad idea for me to install them even though I have done many over the years on guitars. So I put on my brave face, kissed the dogs goodbye and ventured out onto the evil freeway – at the start of rush hour(s).

I did not get lost, I did not crash, and on the way back home in the peal of the rush I turned on my truck radio. Yes, I made it home and listened to some tunes on the way. Not really that distracting because top speed was about 20 for most of the trip. The dogs were really impressed with the strap buttons and I suspect the fact that I made it home before doggy dinner time had a lot to do with that.

Now I can hold and play my dulcimers without them shooting out off my lap like rockets headed for a crash landing!
So today I just was, I made a goal, and I did something normal.

Cognitive Reserve Hypothesis
by Shauna at Bugs, Bikes, Brains

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.

S.


This concludes the 54th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on February 11, 2010. 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 9, 2010.

Thank you.

Comments for this post.

Ampyra (dalfampridine), walking ability and MS patients

Late Friday afternoon, January 22, 2010, the Food and Drug Administration (FDA) announced that they approved AMPYRA™ (dalfampridine, formerly known as fampridine-SR) as a treatment to improve walking in multiple sclerosis patients. Developed by Acorda Therapeutics in partnership with Elan Corp, AMPYRA™ is a proprietary slow-release formulation of the compounded drug 4-aminopyridine (4-AP).

Since I have no personal experience with either AMPYRA™ or 4-AP, I asked a couple of MS friends to share their stories. Please meet Connie and Melissa.

Connie’s Story:
Diagnosed with MS in 1999, Connie quickly learned that she has the primary progressive form of MS. Her initial symptoms include numbness in hands and feet, tingling in arms and legs, extreme fatigue and weakness. She was still walking unassisted in 2002 but by the end of 2005 needed hand controls for her vehicle and began using a walker, even after four courses of Novantrone.

Read this post in its entirety:

AMPYRA™ (dalfampridine) FDA-approved for MS patients; Connie and Melissa share their stories

Diagnosing Sjogren's Syndrome

In Rheumatoid Arthritis and Sjögren’s Syndrome, we discussed how patients living with RA have an increased risk of developing secondary Sjögren’s Syndrome (SS). Early diagnosis and treatment are important for the prevention of complications in Sjögren’s. However, reaching a diagnosis can often be difficult and may take an average of six and a half years from the onset of symptoms, according to the Sjögren’s Syndrome Foundation.

Sjögren’s syndrome symptoms frequently overlap with or “mimic” those of other diseases including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome and multiple sclerosis. Dryness can also occur for other reasons, such as a side effect of medications such as anti-depressants and high blood pressure medication.

There is no single test that will confirm diagnosis. Your doctor will base a diagnosis on medical history, physical exam, combination of symptoms, and results from clinical and laboratory tests. A rheumatologist is often responsible for diagnosing and managing Sjögren’s Syndrome. Criteria for diagnosis considers dryness symptoms, changes in salivary (mouth) and lacrimal (eye) gland function, and systemic (whole body) findings.

Read this post in its entirety:

Sjögren’s Syndrome - Common Tests for Diagnosis

FDA approves Ampyra (dalfampridine), previously known as Ampriva (Fampridine-SR), Amaya (Fampridine-SR), and 4-aminopyridine or 4-AP

Acorda Therapeutics and Elan finally settle on a brand name for what was previously called Fampridine-SR which is 4-aminopyridine in a sustained release formulation.

Today, the U.S. Food and Drug Administration announces that it has approved Ampyra (dalfampridine) extended release tablets to improve walking in patients with multiple sclerosis (MS). In clinical trials, patients treated with Ampyra had faster walking speeds than those treated with an inactive pill (placebo). This is the first drug approved for this use.

In September 2009, the drug was referred to as Amaya (fampridine-SR). In October 2009, an FDA panel voted to recommend approval of Amaya but not the name. Acorda changed the proposed brand name to Ampriva (fampridine-SR). Excerpt from BioWorld report: "Cohen told reporters after the meeting that his firm had proposed to sell fampridine SR under the brand name of Amaya, which appeared in the FDA's briefing documents last week, but has since changed the name to Ampriva. He would not comment on the reasons for the name change."

In a confusing mix of reporting and name changes, it is difficult to determine what MS drug was actually being voted upon in October unless you were familiar with Acorda Therapeutics and their research already. The original PDUFA October 22, 2009 deadline was postponed today, January 22, 2010.

Acorda Therapeutics must have been covering all their bases with the particular brand name proposals. It looks like they bought up the domain ampyra.com just last September and dalfampridine.com and dalfampridine-er.com (and many more) in December. There's nothing interesting there right now, but I'm sure that there will be soon. On the other hand, at least ampriva.com says that it is under construction right now.

Edited to add on Saturday morning: ampyra.com has gone live!

You know, I'm not talking about the drug itself because I've written lots about it before. Just use the search box for fampridine or Acorda on this blog to see what 4-aminopyridine is all about.

Whatever the new name, I sincerely hope that Acorda Therapeutics and their business partners Elan and Biogen Idec aren't really going to charge almost $10,000 per year for this little tablet drug aftera all.

P.S. Do you think that Acorda stopped to think how easy it is to turn Ampyra into v-Ampyra? I certainly hope that they don't prove themselves to be blood-suckers (or money-suckers) with this little new drug which I have faith that many MSers will be glad to try.

(Yes, Jeff and others, that last note was just for you guys in the communications office. I know that you will be looking for blog discussions after this big FDA announcement.)

More: Apparently Ampyra is pronounced am-PEER-ah. Good luck getting that one pronounced correctly all of the time.

Here's what the January 22nd National MS Society's news announcement said:

FDA Approves Fampridine SR, Now Called Ampyra,™ to Improve Walking for People with All Types of MS

The U.S. Food and Drug Administration has approved the marketing of Ampyra™ (dalfampridine, formerly known as fampridine SR, from Acorda Therapeutics) for its ability to improve walking speed in people with any type of multiple sclerosis. This is the first therapy specifically approved to treat a symptom of MS, and it represents a big step forward for the many people who may benefit.

Comment: “The FDA’s approval of Ampyra is wonderful news for many people with MS who experience problems with walking,” said John R. Richert, MD, Executive Vice President for Research & Clinical Programs at the National MS Society. “This brings a welcome symptomatic therapy that may restore some function and make a real difference in quality of life for a large number of people with different types of MS.” Further study and clinical practice may help determine the extent to which the drug may impact other functions not measured in the clinical trials, and provide hints as to which individuals are most likely to respond.

Q. What is Ampyra? (pronounced ahmPEERah)
A. Ampyra, formerly known as fampridine SR, is a tablet containing a sustained-release formula of 4-aminopyridine, which blocks tiny pores, or potassium channels, on the surface of nerve fibers. This blocking ability may improve the conduction of nerve signals in nerve fibers whose insulating myelin coating has been damaged by MS. The first studies of this potassium-blocking approach in people with MS were supported by the National MS Society.

Q. How is a “symptomatic therapy” different from the approved disease-modifying therapies for MS?
A. A symptomatic therapy is usually a drug that addresses a particular aspect of a disease, but taking it does not change the underlying course of the disease or limit the damage caused by the disease. There are many medications taken by people with MS to manage specific symptoms, such as spasticity, fatigue or depression. While there are FDA-approved disease-modifying therapies that are partially effective against some forms of the disease, as well as rehabilitation and symptomatic treatments for some symptoms, until now there was no pharmacologic treatment available for MS-related difficulty walking.

Q. How common are walking problems among people with MS?
A. A recent survey among more than 1,000 individuals with MS and many of their family members examined the impact of difficulty walking on quality of life among people with MS and their families. Some two-thirds of patients reported difficulty walking and of these, 70% reported that such difficulty was the most challenging part of their MS, and most reported that difficulty walking restricts their daily activities significantly, including their ability to travel. (Read more about survey results)

Q. How Effective is Ampyra?
A. Two phase III clinical trials of the drug were sponsored by Acorda Therapeutics. In the first, involving 301 people with any type of MS, walking speed increased by 25% compared with placebo. Results of this study have been published (February 28, 2009 issue of The Lancet (2009 373;732-738, summarized here. Results from a later, second phase III study involving 240 people with MS, announced in 2008, confirmed the benefits seen in the first, finding that a significantly greater proportion of people on the therapy had a consistent improvement in walking speed compared to those who took placebo. Among those taking Ampyra who improved in walking speed, there was a statistically significant improvement in leg strength.

Q. What are the potential side effects of Ampyra?
A. In the first phase III study, common adverse events (side effects) experienced more often by those on active treatment included back pain, dizziness, insomnia, fatigue, nausea and balance disorder. Two serious adverse events led participants to discontinue taking the drug (one case of anxiety and one seizure in a person who developed sepsis from a urinary tract infection). In the second phase III study, additional common adverse events in those on therapy included urinary tract infection, falls, and headache.

Q. How is Ampyra taken?
A. In clinical trials, participants on active therapy took one tablet of the drug by mouth two times per day. According to a company press release, Ampyra will be taken two times a day, approximately 12 hours apart.

Q. When and how will Ampyra become available for prescription?
A. According to the sponsor, Ampyra is expected to be ready for prescription by March 2010. The drug will be distributed through a network of specialty pharmacies and coordinated by a team providing support services to facilitate access to the drug for patients and healthcare providers.

Q. Who might benefit from taking Ampyra?
A. There is no way of knowing in advance whether any particular individual who has MS might benefit from taking Ampyra. In clinical trials, a proportion of people with all types of MS were found to benefit in terms of walking speed. This proportion ranged from 35% to 43% of those who took the drug in the two phase III clinical trials.

Q. Can anyone with MS take Ampyra?
A. Ampyra was approved for persons with any type of multiple sclerosis. However, the FDA’s approval of Ampyra comes with the warning that the drug should NOT be taken by individuals with a history of seizures, or by those with moderate to severe renal impairment (CrCl 51–80 mL/min).

Q. What is renal impairment, and why is it important that those taking Ampyra have adequate renal function?
A. “Renal” refers to the kidneys, which in essence clean the blood. If a person has adequate kidney function, then Ampyra will be cleared from the blood to a sufficient degree between doses so as to maintain a steady drug level in the blood. If a person has moderate to severe kidney impairment, then there is a danger that the concentration of the drug will increase in the blood beyond the amount considered safe. The result could be increased side effects including seizures, which in clinical trials occurred infrequently. For the same reasons, Ampyra should not be taken in combination with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same.

Q. Will taking Ampyra make it possible to stop using my walking aids?
A. There are many different types of walking aids and they address many different types of movement issues, so there is no single answer to this question. It is important that people who try the drug NOT make changes related to walking aids until they determine whether and how the drug affects them. One concern is that in the second clinical trial, a side effect experienced by some participants was increased falling. For that reason, it is important that people taking this medication continue to use caution and discuss any proposed changes in walking aids with their health care provider.

Q. What will Ampyra cost?
A. At the present time, no information has been released about how much Ampyra therapy will cost. The company expects to release that information in coming weeks.

Q. Will Ampyra be covered by my health insurance plan?
A. Coverage for Ampyra will depend on individual insurance plans. Acorda has established a team to provide support services to help patients and healthcare professionals access the drug, including working with insurance carriers and providing patient assistance programs, details of which will be available in coming weeks.

NEJM publishes studies for two Oral MS drugs.

Yesterday, the New England Journal of Medicine published results from three clinical trials testing oral medications for the treatment of MS. One for Cladribine, one for Fingolimod, and one for Fingolimod vs. Avonex. Scroll down this post to find an editorial which was published concurrently with these findings.

Directly below, please find an article written by the BMJ Group (British Medical Journal) and published at The Guardian which clearly points out the basic information regarding these findings.

New treatments on the horizon for multiple sclerosis

Two new drugs for multiple sclerosis that can be taken as tablets rather than injected have been shown to reduce flare-ups of this nervous system disease. One type worked better than the current standard treatment, injections of beta interferon. But the drugs have potentially serious side effects. What do we know already?

If you have multiple sclerosis (MS), the nerves in your brain and spinal cord slowly lose their coating. Over time, these nerves get damaged and may stop working properly. This can affect you in all sorts of ways. The most common symptoms are feeling very tired and weak and having numb or 'tingling' areas.

The most common type of MS is called 'relapsing remitting multiple sclerosis'. This means you have periods without any symptoms, then periods when you get a flare-up of symptoms, called a relapse. The condition is caused by a problem with the immune system, which mistakenly attacks the coating of the nerves. So, most treatments work to change the way your immune system works.

The treatment used most often is called beta interferon. It has to be injected. It's intended to reduce the number of relapses you have, and prevent you from becoming disabled. But it doesn't work for everyone. In studies, around 55 in 100 people still had a relapse over the course of two years, despite taking beta interferon. Another injected treatment, glatiramer acetate, works about as well as beta interferon.

Doctors have been investigating new drugs for MS that can be taken as tablets, instead of injected. We now have results from three big trials (each with over 1000 patients) looking at how well they work. The new drugs studied are called fingolimod and cladribine.

What do the new studies say?

The studies show that these new drugs work better than no treatment, and one of them works better than beta interferon.

Three studies have been published. They compare:

• Fingolimod with a dummy (placebo) drug, over two years. Between 70 and 75 in 100 people taking fingolimod didn't have a relapse during the study, compared with only 46 in 100 taking the placebo drug.
• Fingolimod with beta interferon, over one year. Between 80 and 83 in 100 people taking fingolimod didn't have a relapse, compared with 70 in 100 people taking beta interferon.
• Cladribine with a placebo drug, over almost two years. About 80 in 100 people taking cladribine didn't have a relapse, compared with 61 in 100 people taking the placebo.

Both drugs were tested at two different doses. Higher doses worked slightly better for fingolimod, but there wasn't much difference between high and low doses of cladribine. People were more likely to get unwanted side effects with higher doses.

The side effects were serious in some cases. Two people taking fingolimod died after catching serious herpes virus infections. Four people had breast cancer, and five had a type of skin cancer. People taking cladribine were also more likely to have serious infections or cancers than people taking placebo pills. Overall, serious problems affected 8 to 9 percent of people taking cladribine and about 5 to 10 percent of people taking fingolimod.

People taking drugs that affect the immune system are at higher risk of infections and cancers, because their immune system is weakened by the drugs. Both these drugs reduce the amount of white blood cells (lymphocytes), which protect against infection.

How reliable are the findings?

The findings from these studies should be reliable. They were carried out as randomised controlled trials, which is the best way to find out whether a treatment works. It's important not to compare the results between trials, though (for example, to compare fingolimod with cladribine), because different groups of patients can have different results. We can see this in the difference in numbers of patients having relapses between the two studies that included a placebo drug.

Also, it's important to remember that these studies lasted only one or two years. We need to see long-term results, especially to find out whether they are safe to take for longer than two years.

Where do the studies come from?

Both drugs have been tested by international groups of researchers and doctors, some of whom worked directly for the drugs companies that make the drugs (Novartis Pharma for fingolimod and Merck Serono for cladribine). It's common for drugs companies to fund research into their own drugs, especially while they are under development. The studies were published in the New England Journal of Medicine.

What does this mean for me?

If you have multiple sclerosis, you'll be keen to hear about any new treatments that might help your condition. But these drugs have not yet been licensed and so will not be widely available yet. If and when they are licensed, they may be more suitable for some people than others. You'll need to weigh up the risks of getting serious side effects, with the potential benefits of fewer relapses.

What should I do now?

If you are interested in finding out about research into new MS drugs, speak to your specialist or to the Multiple Sclerosis Society (http://www.mssociety.org.uk/research/index.html).

From:

Giovannoni G, Comi G, Cook S, et al. A placebo-controlled trial of oral cladribine for relapsing multiple sclerosis. New England Journal of Medicine. Published online 20 January 2010.

Cohen JA, Barkhof F, Comi G, et al. Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. New England Journal of Medicine. Published online 20 January 2010.

Kappos L, Radue E-W, O'Connor P, et al. A placebo-controlled trial of oral fingolimod in relapsing multiple sclerosis. New England Journal of Medicine. Published online 20 January 2010.

To find out more about treatments for MS, see our information on multiple sclerosis.

© BMJ Publishing Group Limited ("BMJ Group") 2010

The New England Journal of Medicine Editorial

Oral Therapy for Multiple Sclerosis — Sea Change or Incremental Step?
William M. Carroll, M.B., B.S., M.D., F.R.A.C.P.

The long-awaited arrival of oral formulations for the treatment of relapsing–remitting multiple sclerosis is welcome news for the estimated 2.5 million people worldwide who have this chronic, disabling disease. Since the publication of the first pivotal trial of interferon beta-1b in 1993, practitioners and patients alike have been anticipating the approval of oral therapies because of the relative ease of administration, which should improve adherence and reduce restrictions on lifestyle.

In this issue of the Journal, researchers report the results of three well-conducted trials of the first two oral agents, cladribine and fingolimod, in the treatment of multiple sclerosis. The researchers studied cladribine in the Cladribine Tablets Treating Multiple Sclerosis Orally (CLARITY) trial and fingolimod in the FTY720 Research Evaluating Effects of Daily Oral Therapy in Multiple Sclerosis (FREEDOMS) trial and the Trial Assessing Injectable Interferon versus FTY720 Oral in Relapsing–Remitting Multiple Sclerosis (TRANSFORMS). Although these two drugs differ in their mechanisms of action, both reduce the number of potentially autoaggressive lymphocytes that are available to enter the central nervous system. The articles, which report that the agents are effective and have manageable adverse- effect profiles, raise three questions: How do these therapies measure up against the existing treatments? Are all the longer-term adverse effects known? What do these drug trials tell us about multiple sclerosis and our treatment goals?

Both cladribine (in the CLARITY trial) and fingolimod (in the FREEDOMS trial) were highly effective against placebo over a 2-year period, and fingolimod was more effective than intramuscular interferon beta-1a over a 12-month period (in the TRANSFORMS trial). Each of the three studies involved more than 130 centers in up to 32 countries, and the enrollments of 1272 to 1326 patients ensured that the trials were sufficiently powered to detect an effect of two doses of the active oral agent. Patients had active relapsing disease with durations of 7 to 9 years. On the Expanded Disability Status Scale (which ranges from 0 to 10, with higher scores indicating greater disability), patients had a median score of 2.0 in the fingolimod trials and mean scores ranging from 2.9 to 3.0 in the cladribine trial.

All three studies used the annualized rate of relapse as the primary end point, and high and low doses of cladribine and fingolimod were shown to be superior to both placebo and interferon beta-1a. For cladribine versus placebo, the relative risk reduction in the annualized relapse rate was 57.6% for the group receiving 3.5 mg per kilogram of body weight and 54.5% for those receiving 5.25 mg per kilogram. For fingolimod versus placebo, the relative risk reduction was 54% for the 0.5-mg dose and 60% for the 1.25-mg dose. For fingolimod versus interferon beta-1a, the relative risk reduction was 52% for the 0.5-mg dose and 39% for the 1.25-mg dose. Both agents were superior to the comparators with respect to secondary end points, including measures on magnetic resonance imaging and a number of clinical end points, including the time to the progression of sustained disability at 3 months.

Furthermore, although only fingolimod was tested against the widely used interferon beta-1a, it is likely that the two oral therapies will be at least as effective as other currently available disease- modifying therapies. In this regard, head-to-head trials of subcutaneous interferon beta-1b and interferon beta-1a versus intramuscular interferon beta-1a showed advantages of both subcutaneous regimens over the latter. More recent trials were unable to separate the clinical efficacy of the two subcutaneously administered forms of interferon beta from that of glatiramer acetate.

Adverse effects were similar in all three trials of cladribine and fingolimod, and rates of events leading to discontinuation of a study drug were low but still at least twice as frequent with highdose cladribine (7.9% for the 5.25-mg dose) and fingolimod (10% and 14% for the 1.25-mg dose). Herpetic infections occurred among patients receiving both cladribine and fingolimod. The rate of herpes infections among patients receiving the 1.25-mg dose of fingolimod was 5.5%; such infections were serious in three of these patients, two of whom died. Twenty cases of cutaneous herpes zoster were recorded among patients receiving cladribine, three of which were serious. Three solid tissue cancers (pancreatic, ovarian, and melanoma) occurred among patients receiving lowdose cladribine (3.5 mg per kilogram). Basal-cell carcinoma, melanoma, and breast cancer were all more common among patients receiving fingolimod than among those receiving interferon beta-1a. Macular edema was confirmed in 13 patients, 11 of whom received high-dose fingolimod (7 in the FREEDOMS trial and 4 in the TRANSFORMS trial). Of these 13 patients, 11 recovered within 1 to 6 months after discontinuation of therapy, and the condition of the other 2 patients stabilized. Transient bradycardia and first- and second-degree heart block occurred more frequently among patients receiving high-dose fingolimod than in the comparator groups. Lymphocytopenia was frequent in patients receiving both agents, more so with higher doses. Clinicians and patients will need to evaluate the risks and benefits of each of these drugs. Given the recent studies documenting the development of progressive multifocal leukoencephalopathy among patients receiving natalizumab, a monoclonal antibody against α4-integrin, close postmarketing surveillance will be important to detect any increase in these or other unexpected adverse effects.

The mechanism of action of both oral agents represents a major change from those of currently available drugs for multiple sclerosis. Among a number of actions that are claimed for current therapies is that they change the emphasis of the immune response from activation of proinflammatory type 1 helper T cells to activation of antiinflammatory type 2 helper T cells. Even though cladribine is administered in two or four short courses annually, whereas fingolimod is given daily, both drugs were associated with persistent lymphocytopenia. Cladribine is resistant to the enzyme adenosine deaminase, which causes an accumulation of toxic deoxyribonucleotides in lymphocytes, resulting in relatively selective longterm depletion of CD4+ and CD8+ T cells. Fingolimod is a synthetic analogue of myriocin that is derived from a fungus (Isaria sinclairii). Once phosphorylated, the drug acts to down-regulate the sphingosine-1-phosphate receptor required for antigen-activated lymphocytes to egress, effectively locking them in the nodes. Thus, both cladribine and fingolimod are targeting inflammation, the key driver of immune injury in multiple sclerosis. Similarly, both natalizumab, which blocks lymphocyte access to endothelium in the central nervous system, and the anti-CD52 monoclonal antibody alemtuzumab, which destroys T and B cells, have shown impressive reductions in disease activity. Insights from these trials and others treating the initial stages of disease suggest that early direct targeting of the immune system offers the best hope for the prevention of later disability.

The studies in this issue of the Journal provide a new horizon for patients with relapsing–remitting multiple sclerosis and a welcome increase in the range of treatment options. Although current therapies remain very effective, particularly when they are administered early, and have welldefined side-effect profiles, oral therapies further support a change in treatment approach to directly prevent immune-mediated injury. This approach will probably be followed until the next step in the therapeutic advance occurs, but such a change in strategy highlights the final question: What are the long-term goals of this new phase of therapy?
The question will not be fully answered until the underlying cause of multiple sclerosis is better understood, but the lack of a definable end point remains a contentious issue for clinicians and health care funders alike. Time will determine the long-term effectiveness of these treatments in delaying the development of irreversible disability, and as ongoing, real-life experiments, they will contribute to our understanding of this enigmatic disease.

Copyright © 2010 Massachusetts Medical Society. All rights reserved.

Rituxan, Tysabri, Zenapax are Monoclonal Antibodies

Monoclonal antibodies (MABs) are a type of biological therapy which have an ability to bind to selective molecules found on the cell surface of lymphocytes. (‘Monoclonal’ just means all one type.) Monoclonal antibody therapy uses antibodies that are made in the lab rather than by a person's own immune system. This type of treatment is used in inflammatory conditions such as MS, rheumatoid arthritis, or malignant diseases such as leukemia and lymphoma.

The first monoclonal antibodies (MABs) were made entirely from mouse cells. One problem with this is that the human immune system will see these antibodies as foreign (because they're from a different species) and then will mount a response against them. In the short term, this can sometimes cause allergic-type reactions. In the long term, it means that the antibodies may only work the first time they are given; after that, the body's immune system is primed to destroy them before they can be helpful.

Read this post in its entirety:

Monoclonal Antibodies: What are they?

MS Patient Support Organizations

In addition to MS organizations who are focused on research and registries, we have several organizations which offer support and services to folks affected by multiple sclerosis. The following provides an introduction to the services provided by the more prominent nonprofit organizations in the United States which serve on a national level.

National Multiple Sclerosis Society

Living with MS means the road to wellness is more than treatment of the disease. Equally important are health and wellness strategies, a strong support network of family and friends, satisfying work and leisure activities, a meaningful place in the community, and adequate attention to one's inner self.

The National MS Society offers an extensive variety of programs, services and resources for people living with MS, including family members, caregivers and other members of their support systems. Local Society chapter programs vary from one community to another. To learn more about all of the programs offered in your community, please contact your chapter.

Read this post in its entirety:

MS Organizations: Support and Patient Programs

Helpful Tips for those with RA or MS

A new post is up at MyRACentral discussing some helpful tips when you have RA. The suggestions can equally apply to folks who have MS. Please head on over to read and add your own suggestions.

Prescription Medications

1. Ask for easy-to-open medication bottles. Prescription bottles can be difficult to manage when you have RA hands. If you have trouble removing childproof lids on prescription bottles, ask your pharmacist to replace them with easy-to-open lids. These will take much less effort to open and put less strain on delicate hands and fingers. However, if you have children in the house, you will need to be especially careful to store your medications in a place which is safely out of children’s access.

2. Organize medications in daily and weekly containers. Go a step beyond the easy-to-open lids and organize your medications in weekly containers, the molded plastic type which are available at most pharmacies or discount stores. These containers with snap-lock hinged lids come in 7-compartment, 14-compartment, or even 28-compartment configurations. You can choose one day a week during which to fill the compartments with your medications and not have to open those tricky childproof lids for another week.

Read this post in its entirety:

10 Things to Do to Help Ease Your RA

Musical Laughter

Definitely one for all of us extracurricular "geeks" -


And in case you've never heard the Pachelbel Rant -


I find these absolutely hilarious. Probably due to my background as a longtime geek or just a twisted sense of humor. Either way, I recommend no drinking while watching. I don't want to hear about anybody coughing on their beverages or spitting on their computers. K?

Carnival of MS Bloggers #53

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

Happy New Year!!

Here we are in 2010. Wow. This will be the 3rd year in the Carnival of MS Bloggers' existence. Can you believe it?! We've had two years of brilliant writing and sharing by MSers of the blogosphere. Thank you so much for reading and for supporting each other with such open arms and hearts. MSers truly rock!

What The H***?
by Judy at Peace Be With You

What the H*** happened
to my life, the one I planned?
It’s sure not this one.

I’m used to making
lemonade out of lemons,
but this is too much.

There is gold here, yes,
but I tire of panning
and getting pebbles.

If MS Is A Gift, Where Do I Go To Return It?
by Zoomdoggies at Howling at the Moon

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.

I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants

A Hero's Journey
by Judy at Peace Be With You

It’s okay to cry.
It’s not lack of bravery.
These can coexist.

Crying can free one.
Stolidness can imprison
a voiceless heart.

A hero’s journey
helps us to understand fear,
not avoid it.

Pity Party, Anyone?
by Mis at Just My Thoughts....

I talk about strength, coping, educating, and support here a lot. But, there's another side to living life with a disease like MS: Pity parties. It struck me after talking to a friend that the image I portray of myself here isn't entirely accurate. "But Mis, you're so strong". I hear that so often, and it always baffles me, because Lord knows I don't feel strong at all. Truth is, most days I am afraid of my own shadow and the shadows of my future. While I do want to encourage those either living with MS or know someone with it to empower themselves with the strength knowledge can give, I don't want to paint myself as some stoic pillar of strength either. So... today I want to bring you along to my pity party.

Yes, I most certainly DO have pity parties too. Most days I go about life in relative peace of mind, but some days I wake up and just think "URGH!" Thankfully, my pity parties don't last long. I spent the first six months post diagnosis in one huge pit of depression, and I learned from those dark days I can not allow myself to wallow in what is versus what used to be. These days my down spells typically last anywhere from a couple hours to couple days, but never very long overall. So why have pity parties at all? Simple really: Because I am human. I really believe anyone struggling in their life has the right to feel, process, and deal with those emotions. It's when we don't deal them that they grow into something much deeper and darker. I've been in that dark place, and I have no intentions of going there again if I can avoid it. For me, letting myself have "ok my life sucks" moments allows me to feel and process those emotions, and then move on.

My pity parties usually consist of a lot of sadness, and are usually brought on by a symptom worsening that particular day. Last night for instance, I had a small one. The left side of my face had been bugging me all day, my left leg simply did not want to work correctly no matter what I did, and I'd been having girdle band pain all day. I had gotten up to use the washroom and my leg just hurt so bad as I limped along. The muscles just refuse to relax sometimes, and trying to walk on a cramping leg is rather painful. My husband heard me cursing under my breath as I made my way through the living room, and asked what's wrong. My response? "I just don't want to have this damn disease anymore." The minute the words left my lips, it was like a flood gate. I ended up in the bathroom for a good 20 minutes just to have a good cry alone. I had had enough, I was in pain, I was frustrated, and I just didn't want to have this wicked, nasty disease anymore. Logically, I know no amount of tears or cursing is going to change a thing. I can curse up a blue streak bad enough to make a sailor blush, and I can cry so hard I fill the bathtub, and when it's all said and done I'll still have MS. But dang it, I don't care. Sometimes I just need a good crying, angry moment to let it all out. A moment to say "poor me, this sucks"...so I can then calm down and move on.

So while I don't want pity from anyone else, sometimes, I do have to allow myself a little pity party for myself. It's my way of coping and moving on without falling into a true depression. And you know what? I truly believe that's ok, if not healthy. Better to have a crying moment in the bathroom than months in depression, right?

For all of you struggling in your lives, be it due to MS, another illness, or simply life circumstances: Remember it's ok to have moments of weakness. It's ok to cry, and it's ok to be mad as hell. Allow yourself to have a little pity party when needed so you can process those emotions. Once you're done cursing and crying- leave the party and rejoin your life a stronger, calmer person. It's great to have strength the ability to cope with all life throws at you. But when you reach the point you're thinking "The next person to say 'but you're so strong!'...I'm going punch out", it's time to let yourself have a much needed pity party. It's ok to be human- even with all our flaws and imperfections.

Be well all :)
Mis

Expressing Anger 
by Judy at Peace Be With You

Anger is lethal
to the mind, body, and soul,
yet needs expression.

This powerful force
can also right many wrongs.
Safe release is key.

We MSers must
monitor which of the two
angers we express.

Finding Balance 
by Judy at Peace Be With You

So many brave ones
face crazy uncertainty
and never complain.

Many admit fear,
acknowledge they are so scared.
Which are better off?

Fear paralyzes.
Denial can do the same.
Somewhere balance lies.

This concludes the 53rd edition of the Carnival and the beginning of 2010!!

The next Carnival of MS Bloggers will be hosted here on January 28, 2010. 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 26, 2010.
Thank you.

Comments for this post.

Baring Our Souls

We share so much of ourselves here in the blogosphere, or rather some folks share details of their personal lives and some might fabricate their lives. Others just talk in generalities and present objective information.

I've never been good at fabrication. In fact my Mom always said that my face is incapable of lying. I tend to believe her as I can't hide things very easily at all.

There are a few things which I do try to hide (not very effectively). I tend to eat in secret (in my bedroom) and not move enough to burn off the calories. This is a hard thing to share in a public forum but it's true. As a result I am miserably overweight, scratch that, obese and not in good physical shape. This is NOT good for living with chronic illness.

So in an attempt to get honest with myself and to hopefully connect with others who might be experiencing similar issues, I approached HealthCentral about sharing my journey in a journal form on their Obesity website. I had noticed in December that there weren't any "regular people" using the site until Kimberly signed up to blog. She's a sweet 18 year old who has tackled her weight and continues to focus on being healthier.

So far I've only written 2 posts, but feel that I've shared so much of myself in them already:
271.6 lbs and Body Fat and BMI - My, oh My!!

It seems like I'm going through so many changes right now. I've started using Rituxan and haven't started using Copaxone again (yet). I'm using much less symptomatic treatments as a result. Less gabapentin, hardly any provigil, no baclofen (until the cold weather just recently has gotten the better of those muscles). This is good news.

Last year I had added Wellbutrin to my regular entourage of medications to help out the zoloft which seemed to not be doing as much any longer. Although whenever I had tried to taper off the zoloft, I could feel the negative affects so it must have been doing something.

But this past fall, I decided that I did want to taper off the zoloft if for no other reason than I really wanted some of my sexual mojo back. Yes, I had come to the conclusion that one reason I have basically no sex drive is due to the medication. I'd like to get that part of my life moving again. (Sorry if this is TMI.)

I took the last pill in my current supply at the beginning of December. Then my Grandfather died. Then I had a stressful trip. Then my boyfriend of 4.5 years who has been by my side since before the official MS diagnosis and who stayed after the RA diagnosis did not propose over the holidays like I honest-to-goodness thought that he would do, finally, this year.

I've become very weepy, but it's hard to know if it is the lack of zoloft (while I'm still taking Wellbutrin) or just simply life events which has me this way. And now we're back into a new year where folks are talking resolutions and other bleh stuff.

My intent at writing about my weight and health is not to tell people what they should do. Heck, I don't really even know what to do myself right now. But I intend to be honest with myself in public. Remember, I am not really capable of making things up. I am who I am and by sharing my journal with whoever is interested, I hope.....

Oh, I don't know. I just hope not to feel so alone I suppose.

The 2009 Medblog Awards - Please Nominate and Vote!!

2007 - Brass and Ivory was nominated as Best Patient Blog
(winner: Chronic Babe)
2008 - Brass and Ivory was a FINALIST for Best Patient Blog
(winner: Six Until Me)
2009 - It's OUR year!! Please nominate, spread the word, and VOTE!!!

Medgadget, in conjunction with PDA medical software maker Epocrates, hosts this years 2009 Weblog Awards and is now taking nominations. This is the sixth year of the competition and these awards are designed to showcase the best medblogs, and to highlight the exciting and useful role that the medical blogosphere plays in medicine and society. The categories for this year's awards include:

Best Medical Weblog

Best New Medical Weblog (established in 2009)

Best Literary Medical Weblog

Best Clinical Sciences Weblog

Best Health Policies/Ethics Weblog

Best Medical Technologies/Informatics Weblog

Best Patient's Blog

Nominations are now accepted in the comments section of this post. When nominating, please indicate the blog's name and URL, as well as your thoughts why this particular blog deserves recognition. A blog can participate in more than one category, so please be precise which one(s). When we have all the nominees, Medgadget editors will sort through all the blogs, and we will select five blogs in each category based on merit, and on our own internal voting results.

The following time line will be observed:

Nominations will be accepted until Sunday, January 24, 2010.

We will announce the finalists on Monday, January 25, 2010.

Polls will be open from Wednesday, January 27, 2010 and will close 12 midnight on Sunday, February 14, 2010 (EST).

Winners will be announced on Friday, February 19, 2010.

Medgadget.com, as well as the individual blogs of our editors, are not eligible to participate in the awards.

Voting for the awards will be open to all, but you will only be able to vote once. (No hacking or cookie manipulation will be tolerated -- only one vote for each category from a particular IP address.)

All final decisions will be made by our editors.

Good luck to all!

011110

In Celebration of the Palindrome:



Or better yet, positive improvements upon reversal.

Welcome to the MS Blogosphere

Over the past month, I have received some nice notes from new MS bloggers, discovered a few new MS blogs, and found more which had moved locations. Please welcome these folks to the community (even if their not really new).

Multiple sclerosis affects family and friends too! by Hayley

Me, Myself and Tysabri by Tanja

Me, My MS and I by Jenna

My MS + I by Nat

Dave's Magical Brain by Dave

MS-understood by Nikki

HotchPotch Ehhh?? by Andaje

A Daring Adventure by Tess

Thoughts on MS Cognitive Meltdown by Tim and Janet

Todd's blog by Todd

Success Despite MS by Don

Ghosting is Taking Control by Miranda

i-Inject by Dave

Question on In-Home Personal Training for MS Patients

I received an email from a man (Rob) whose wife has MS. He is currently conducting research on the necessity of personal training for MS patients, specifically into the idea of developing an in-home, personal training practice specializing in MS patients.

I've said before that I thoroughly appreciate and enjoy the specialized attention I have received in physical therapy. I've read of other MSers who have trainers who come to their homes for sessions and they seem to really like that arrangement. Some folks like Diane even have volunteers come in to help them in achieving their mobility goals.

TAKE SURVEY HERE: http://www.surveymonkey.com/s/7P56NVT

Rob has built an anonymous survey consisting of 4 questions to help him understand if there is a need for this type of service. I took the survey which is simple and completely anonymous. I'm even including the questions below for you to preview (please answer them in the survey).

These questions are obviously geared toward market research, but I respect that someone is looking into the idea of in-home personal training designed specifically for MS patients. I once told a friend that this would be something special if a pharma company or other group were to sponsor this type of service for patients at no, or low cost. Now THAT would be something practical and useful.

TAKE SURVEY HERE: http://www.surveymonkey.com/s/7P56NVT

1. If available, would you consider using the services of a certified personal trainer, who specializes in working with MS patients, to enhance your physical and mental strength?

• Yes
• No

2. What would you consider to be a fair price for a 50 minute training session that was in your home, once per week, and that provided an independent & customized plan for the remainder of the week?

• Less than $40
• $41-$50
• $51-$60
• $61 or more

3. If this service were available to you today, would you schedule an appointment? If you answer "no," please provide a brief explanation on what, if anything, would change your mind?

• Yes
• No
• Other (please specify)

4. Which answer best describes your current physical condition?

• Able to walk unassisted
• Able to walk assisted (cane, walker, etc.)
• Use of a wheel chair some or all of the time
• Complete dependence upon a wheelchair
• None of the above (please describe below)
• Other (please specify)

Rob, I hope that you get many responses and good luck in your endeavors. It is great when individuals identify a need and find a way to satisfy that need for others. Good luck.

TAKE SURVEY HERE: http://www.surveymonkey.com/s/7P56NVT

NMSS to Fund Research into Zamboni's Venous Insufficiency (CCSVI) Theory in MS

Lots of discussion and websites have popped up in response to Dr. Zamboni's theory (Chronic Cerebrospinal Venous Insufficiency or CCSVI for short) and proposed surgical procedure (balloon angioplasty or placement of stents in narrowed portions of the jugular or azygos veins). Here are just a few:

This is MS Forum
CCSVI on Facebook
Venous Multiple Sclerosis
Fondazione Hilarescere

The following announcement comes from the National MS Society (USA).

UPDATE: Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS – Letters of Intent Received from Request for Research Applications Released Worldwide

Updated January 7, 2010

Summary: Recent reports are calling attention to the idea that a phenomenon called CCSVI, a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paulo Zamboni from the University of Ferrara in Italy. Based on the results of his initial preliminary findings, Dr. Zamboni states that this pilot study warrants a subsequent larger and better controlled study to definitively evaluate the possible impact of CCSVI on the disease process in MS.

It has been proposed by Dr. Zamboni, but not yet proven, that CCSVI may be corrected through endovascular surgery, which involves inserting a tiny balloon or stent into blocked veins in order to permit the flow of blood out of the brain and spinal cord, a procedure that has been called “liberation therapy” in some reports.

UPDATE: The National MS Society is undertaking the funding of new research on CCSVI in MS and has invited investigators worldwide to apply for grants that would explore this lead. In response to a January 6 deadline, the National MS Society and the MS Society of Canada received numerous letters of intent from investigators from seven countries. These letters of intent, which briefly describe the proposed research, will be reviewed and those that meet grant guidelines will be invited to submit full research proposals.

CCSVI Research Funding Timeline
January 12, 2010 – Investigators whose letter of intent meet guidelines are invited to submit full research proposals with a deadline of February 9, 2010.
May 2010 – International panel of experts conducts an expedited review of all applications received through this special request for applications.
June 2010 – Funding decisions announced.
July 1, 2010 – Anticipated start date for funding of any successful research applications.

The applications will undergo an accelerated review process by an international panel being convened in cooperation with other MS Societies to ensure an expedited, coordinated response. If this hypothesis is confirmed, it may open up new research avenues into the underlying pathology of MS and new treatment approaches to therapy.

Background: In a recent study by Dr. Zamboni and colleagues, the team evaluated abnormalities of blood outflow in major veins draining from the brain and spinal cord to the heart in 65 people with different types of MS, compared with 235 people who were either healthy or who had other neurological disorders. They used sophisticated sonography techniques to detect abnormalities of venous drainage. The investigators reported evidence of slowed and obstructed drainage in the veins draining the brain and spinal cord in many of those with MS. They also found evidence of the opening of “substitute circles” – where the flow is deviated to smaller vessels to bypass obstructions, and these were often found to have reverse flow (reflux) of blood back into the brain.

The investigators call this venous obstruction “chronic cerebrospinal venous insufficiency,” or CCSVI. The treatment status of the people with MS (i.e., whether or not they were on an MS disease modifying drug) did not appear to influence whether they showed signs of CCSVI. The authors speculated that the reverse flow of blood back into the brain might set off the inflammation and immune-mediated damage that has been well described in MS. This study was published in June 2009 (J Neurol Neurosurg Psychiatry 2009; 80:392-399).

It is proposed, but not yet proven, that CCSVI may be corrected through endovascular surgery. This surgery is being called “liberation therapy” in some reports. One study getting underway was described at the 2009 ECTRIMS meeting in September. It involves a collaboration between researchers in Italy, Buffalo (NY) and Birmingham (AL) who are attempting to treat venous obstruction in 16 individuals using balloon dilation such as has been used for many years to treat blocked arteries.

In a small, open-label study by Dr. Zamboni and colleagues published in December, the team evaluated the safety and preliminary outcomes of vascular surgery (percutaneous transluminal angioplasty) in 35 individuals with relapsing-remitting MS, 20 with secondary-progressive MS, and 10 with primary-progressive MS. (J Vasc Surg 2009; 50:1348-1358) They reported some positive impacts and suggested that controlled trials were necessary to better determine potential safety and benefits of this procedure.

Next Steps: The National MS Society has prompted communications between MS Societies worldwide and leveraged resources to ensure an open exchange of information and a coordinated and expedited approach to conducting and evaluating additional research on CCSVI. On December 16, 2009, the Society released a worldwide Request for Applications to the scientific community to explore CCSVI, and is collaborating with the MS Society of Canada and possibly other societies to convene an international panel of experts to conduct an accelerated review of proposals. We are also working with our sister MS Societies around the world to assure that our research strategies are coordinated. Through an internationally coordinated and expedited review process, new CCSVI research projects are expected to begin July 1, 2010. (See Research Funding Timeline above for more details.)

According to the Buffalo Neuroimaging Analysis Center, although 500 subjects have already been selected for their initial combined transcranial and extracranial venous doppler evaluation study, they are still seeking participants for a larger-scale clinical study with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of obstructions.

To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, it is crucial that such surgery be performed only as part of controlled trials, especially since there have been anecdotal reports of surgical attempts to treat CCSVI in people with MS resulting in adverse events, including one reported death.

Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to prove that this phenomenon is the cause of MS.

Frequently Asked Questions About CCSVI and MS

Q: What is the National MS Society’s view of CCSVI?
A: In trying to find the cause and more effective treatments for a disease as complex and unpredictable as multiple sclerosis, the Society is steadfast in its commitment to pursue all promising avenues of research that can lead to improved treatments and ultimately, a cure. It is important for researchers to think outside the box and we believe Dr. Zamboni has done this. His hypothesis is a path that must be more fully explored and Dr. Zamboni himself has stated that additional research is essential to evaluate it.

Q: Will the National MS Society fund research into CCSVI in MS?
A: The National MS Society is pursuing follow-up research in how CCSVI might be involved in the MS process and we have invited investigators from around the world whose research is relevant to MS to submit proposals to apply for grants that would explore this lead. These applications will undergo an accelerated review process.

Q: Do the reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?
A: No. Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease.

Q: If CCSVI turns out to be important in MS, can it be treated?
A: No one knows yet. Surgical procedures for CCSVI in MS are still experimental and should be undertaken only as part of formal clinical trials that include all of the standard safeguards that are followed in such trials.

Q: How can I get involved in research on CCSVI in MS?
A: A larger-scale clinical study is getting underway in Buffalo, New York and is now recruiting participants nationwide with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of venous obstructions.

Q: I have MS. Should I be tested for signs of CCSVI?
A: We do not recommend testing for signs of CCSVI unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.

Q: Does CCSVI make the standard treatments of MS meaningless?
A: No. There is ample evidence proving that the FDA-approved therapies for MS provide benefit for people with most forms of MS.

Q. How can I continue to be informed of CCSVI developments as they occur?
A: As new information becomes available about CCSVI, it will be posted on the National MS Society’s Web site, www.nationalMSsociety.org

Common Myths about Rheumatoid Arthritis

With such a tiny percentage of Americans living with RA, approximately 1.3 million adults according to NIAMS, it is no wonder that the general public knows so little about the disease and believes the many myths floating. So let’s get started dispelling some of the most common myths.

Myth #1: Arthritis is only for OLD people.

Myth #2: Arthritis is arthritis - It’s all the same thing, right?

Myth #3: In rheumatoid arthritis, swollen joints are alway red and thus easy to diagnose.

Myth #4: You must wait until the pain is severe and your have serious joint problems before starting treatment for your RA.

Myth #5: All I have to worry about with RA are my joints; it doesn’t affect my health otherwise.

Myth #6: Painful, stiff joints from rheumatoid arthritis need to be rested most of the day and exercise is a "no-no" when you have RA.

Myth #7: Arthritis is caused by cold, wet weather.

Myth #8: Arthritis is caused by poor diet or specific substances such as aspartame.

Myth #9: If I have RA, my children are likely to get it as well.

Myth #10: Most people with rheumatoid arthritis end up in a wheelchair or nursing home because of the disease.

Read this post in its entirety:

Top Ten Common Myths about RA - Busted!!

A Special Day

Happy Birthday Mom.
I love you!!

Common Myths about Multiple Sclerosis

Multiple sclerosis is often misunderstood, and for many people, the very name suggests things like permanent disability and visions of wheelchairs. The truth is that MS is a manageable disease, and a great many people with MS live active, fulfilling lives. That said, the progression of multiple sclerosis differs from person to person, so it's hard to gauge how the disease will affect each individual.

Myth #1: Multiple sclerosis is a fatal disease.

Myth #2: Since there is no cure for MS, there are no treatments for MS.

Myth #3: Everyone with MS ends up in a wheelchair.

Myth #4: Multiple sclerosis isn't a physically painful condition.

Myth #5: People diagnosed with MS should immediately quit work and go on disability.

Myth #6: People with multiple sclerosis shouldn’t have children.

Myth #7: Multiple sclerosis only affects white people.

Myth #8: Multiple sclerosis is caused by heavy-metal poisoning, aspartame, poor diet or negative thinking.

Myth #9: Natural treatments are "safer" and more effective than prescription medication.

Myth #10: Multiple sclerosis is easy to diagnose.

Read this post in its entirety:

Top Ten Common MS Myths - Busted!!

New Years Concert at the National Gallery of Art

Saturday afternoon I rehearsed for the annual New Years orchestra concert at the National Gallery of Art. Yes, the art gallery features more than just paintings and portraits. There is art, sculpture, film, lectures, concerts, and more.

This year's New Years concert (on Sunday, January 3rd) features music of Bizet, Ginastera, Satie, Serebrier, and encores of Blue Danube Waltz, Pizzicato Polka, Radetzsky March, etc. After expecting to only play at the very beginning of the program and at the very end, I was pleasantly surprised to see that Serebrier's arrangement of Carmen Symphony includes four horns. Yay!! BTW, Jose Serebrier is returning as our conductor for this concert.

We rehearsed in concert order, as this is Mr. Serebrier's preferred method to work. The first piece programed is "Malambo" from the Ballet "Estancia" by Ginastera. This four minute piece of music has some fun horn parts. Yippee!!

As I was required to breathe deeper and support more fully, it was like my heart and soul were getting a well-deserved massage...coming to life after a long hiatus. It felt good, really good. That smile developing from deep inside is the very best kind!!

After rehearsal one of the horn players (who I hadn't seen since last year's New Year concert at the Gallery) asked how I was - how my health was doing. I answered in the positive. He remembered both that I have a couple of autoimmune diseases and that I do some freelance writing about it. We had a really quick conversation on the way to the parking lot and I left smiling.

I'll be at the National Gallery of Art today for another rehearsal and the concert at 6:30pm. If you are in the Washington, D.C. area and want to enjoy a FREE Sunday concert, be sure to be in the Gallery by 6pm. The outside doors are open until 6:30pm but attendees begin lining up before 6pm.

The National Gallery of Art is located on Constitution Avenue between 7th and 4th Streets. The concert is being held upstairs in the West Garden Court (where one of the fountains is located). Concerts usually are well attended so arrive early.

I'll be looking forward to having my heart and soul massaged further. Makes me breathe more deeply and refreshingly just thinking about it. :)

What Do You Fear?

“But I’m scared of your health....”

Wow, that’s a loaded statement now isn’t it? Who isn’t scared of (or for) their health when they’ve got a chronic, non-curable, progressive and unpredictable disease? And what if you have more than one....

Well, that’s a whole hell of a lot of fear which one could carry around!! I don’t know about you but my load is heavy enough to carry alone without adding anyone else’s to it.

What do people naturally do when they are afraid? They avoid things associated with those fears, whether directly or indirectly. Does that make the source of fear go away? No.

Here, let me share something. I’m afraid of what the future holds. I’m afraid of what MS and RA have the power to do to my life, if I give them full reign. I’m afraid of that evil monster of mine which goes by the name of depression. I truly hate that little beast which hangs around just thrilled when it gets fed big healthy meals of fear and loathing.

Yep, I used the word loathing. I sometimes loath my life (just a tiny little). I am not doing what I had ever pictured and do not have the life I had dreamed of. I didn’t spend 10 years on college campuses earning various degrees to NOT be a college professor and/or full-time symphony musician. I never planned to spend the fist half of my 30’s networking, working hard, getting known in the area to have health issues come in and chop down my dreams during the 2nd half.

Please don’t get me wrong. I LOVE teaching music lessons, especially when the students develop a similar taste for the challenge. I’m THRILLED that I’m able to make a difference in the lives of others whether in my teaching, in my spoken words, in my written words, or even in nonverbal acts of kindness. I never thought that I would be doing what I do now (teaching privately and writing) but find that it fits me well.

I am BLESSED beyond measure that I am safe, have a roof over my head, will never go hungry, and am able to use my mind and talents to earn a little bit of a living. But I can’t do these things alone and I NEED more in my life.

Not only do I need to be loved, I need to FEEL loved. I need to be able to share the joy of being loved and cared for with others around me. Love does not survive in a vacuum. It needs air, food, sunshine, water, and space. It needs to breathe, too.

If I do not feel truly loved and supported (really, truly, deep down, regardless of words spoken), that void serves to feed the depression monster. When depression grows and gets strong again, it negatively affects my health. Depression loves when that happens, oh boy does it.

When depression settles in, it likes to take away the enthusiasm for healthy living, both physical and mental. Then depression serves heaping piles of deconditioning, poor food and sleep choices, and inflammation to the MS and RA critters. They LOVE that!!

As MS and RA get stronger, I get more fearful (as I’m sure others do too). So, PLEASE, don’t fear my health.....I carry enough of that already for both of us. In fact, it would be wonderful if you could help to share my load and take some of the burden away.

Can we do that in the coming year - live by the “burden shared is burden halved” philosophy? I’d like that.

With some pondering this week, I realize that I’m around the same age that my grandmother was when she had her first heart attack, which is also around the same time I was born. I am the exact same age that my mother was when her mother died. I’m also about the same age as my other grandmother was when her first grandchild was born. I have not had any children as of yet.

Timelines seem to be on my mind lately. But please let’s not fear the future; it will be there, worries or not.