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Educational Event

14 Saturday Jun 2014

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Several weeks ago W and I attended an MS dinner program in Charlotte.  It was put on by MS News and Views and instead of being sponsored by a single drug company, it was sponsored by several which means that the information provided to us was largely unbiased.  There were two presenters: Jessica Thomas, a social worker and MS advocate who spoke about MS and its impact on the family and Dr. Jeffrey, an MS Specialist in the area who spoke about emerging therapies.

My major takeaways from Dr. Jeffrey’s talk:

  • Although there are an estimated 400,000 people in the US with MS, those numbers are based on 1994 data and the true number is likely much higher
  • MS is the leading cause of disability in young people in the US today
  • the etiology is unknown – it is guessed to be auto-immune or may be triggered by a virus in individuals with appropriate genetic susceptibility
  • It was thought that Epstein Barr Virus may be the culprit; however, it has not be found in the brains of patients who dies from MS complications
  • When MRIs are completed with contrast dye (gadolinium), the dye is picked up into areas of active inflammation
  • “Silent explosions” are lesions that are shown as enhancing lesions on MRI that may not be physically noticeable (no symptoms), but over time will lead to cognitive decline
  • There is typically a pre-clinical phase when patients experience silent explosions and patients generally do not feel good (this definitely happened to me)
  • For every non silent attack (spinal cord lesions or optic neuritis for example), there are typically 5-10 new silent lesions
  • In absence of treatment, Relapsing Remitting MS transitions to Secondary Progressive in 50% of cases and typical time to walking with a cane is 15 years (average)
  • The goal of treatment is to keep the lesion load to zero because you don’t want a lesion to hit at a strategic location (one spinal lesion can equal a wheelchair)
  • Ocrelizumab/Ofatumumab – Should be FDA approved in 2016.  Humanized form of Rituxan/Rituximab (monoclonal antibody) with positive outcomes in clinical trials.  80% decrease in relapse rate at 6 months and a 97% decrease in gadolinium enhancing lesions.  In a two year time period, only 2 of 200 patients had new lesions.

For those who are interested, the entire program was video taped and it is available online for viewing in two parts.  The first presentation below is Dr. Jeffrey’s talk followed by the Q&A.  For those who are evaluating MS treatments, I would highly recommend watching it.  His presentation goes through each of the newer medications in detail and he introduces several new drugs that are coming to market.  Of particular interest to me, Dr. Jeffrey talked about Rituxan (Rituximab) briefly – the drug that I am on.  You can hear that portion if you skip ahead to 1:10 or so and around 1:14 I ask about switching from Rituxan to one of the new medications in 2016.

The second video is Jessica’s talk about MS and the family.  Although we don’t have children and are not planning to have any, I think her talk would be hugely helpful for anyone who has MS and has/is around small children.  I appreciate many of her comments about adjusting to the disease.

If you have MS (or any chronic illness for that matter), I would suggest seeking education events like this one that is not sponsored by any individual drug company.  Unless you are specifically interested in the drug being promoted, this type of event will offer a much better, more balanced learning experience.

Multiple Sclerosis: Education Event

12 Wednesday Feb 2014

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Recently my husband and I had the opportunity to attend an MS educational event held in a near by city.  Since there is no support group local to us, it was literally my first time being around other MS patients in person (other than maybe in a doctor’s office?).  We estimated 150+ folks there.  We walked in, registered, and sat down at a table for a morning snack and I immediately started to cry.  My husband looked very confused and all I could say is “I am not alone.”  If I got nothing else out of that trip, it was such a relief to be in a large room with so many people who had MS and to see the various stages.  There were folks in a wheelchairs to be sure, some with canes, but many were walking around.  I didn’t see too many people my age (early 30s), but that didn’t bother me too much.

The event was sponsored by a drug company, so there was a healthy dose of infomercial-ness about it (as you would expect), but I also got quite a bit out of the speakers and the Q&A at the end of the main talk.  For those who were diagnosed long ago, these facts would have been clear or even common sense, but there were several rather enlightening things I learned that I wanted to share:

  • Although many MS patients (myself included) experience symptoms in a foot or leg, there is actually no damage to the nerves in that location.  The hands, feet, legs, etc are fine.  The damage is only occurring in the brain, spinal cord, and optic nerve.
  • The myelin damage (damage to the coating around the nerves) that occurs in the central nervous system slows the speed of transmission of signals.  This explains why sometimes you “tell” your body to do something and it will, but not quite when you may expect it to.
  • MS does not pre-dispose you to other illnesses (ex: sinus infections).  The disease itself is not marked by a “high” or “low” immune system, but an immune disruption
  • A relapse = longer than 24 hour acute new symptoms or worsening of existing symptoms
  • The MS popluation is generally broken down into sub types: 85% have Relapsing Remitting MS (RRMS), 10% have Primary Progressive MS (PPMS), and 5% have Progressive Relapsing MS (PRMS).
  • 50% of those with RRMS used to progress to Secondary Progressive MS (SPMS) without treatment
  • Relapsing Remitting MS is simply characterized by not getting worse in between relapses.  A RRMS patient may not get fully better (i.e. return to their original state), but they will develop a new baseline and will show no progress of disability until the next relapse (this was a HUGE light bulb for me as I have been waiting to return to my pre-attack state which may never happen)
  • MS affects 2.1 million people worldwide and 400,000 folks in the US
  • MS is most common in colder climates (further from the equator)
  • The risk if you have a first degree relative with MS is 1/40
  • “Invisible” MS symptoms make it hard for patients to look sick – fatigue is a good example
  • The first MS medication was introduced in 1993 (!! that is SO recent)
  • If you decrease relapses and decrease new lesions, you will decrease disability progression
  • Early treatment slows the course of MS

Hopefully there was a tidbit above that is as helpful or encouraging to other folks as it was for me.  We are attending another educational event in May and we are definitely looking forward to it!