Category Archives: Education

The Ice Bucket Challenge

23 Saturday Aug 2014

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Facebook-land and the Twitter-verse has been rampant with videos and posts about the Ice Bucket Challenge.  I’ve been seeing quite a few posts where folks complain about the pervasiveness and even some (highly disappointing) posts in a few of the MS support groups that seem to begrudge the attention and funds being brought to ALS as a result. As someone who is dealing with MS, I now know several people with more aggressive forms of the disease and I know it can be a nasty – there’s no question – but ALS is terrifying.

In case you haven’t yet seen it, I encourage everyone to watch this video (the first part is pretty ridiculous, so I skipped forward to start the video at the part that I think everyone should see):

I found this video incredibly moving and it shows the quick, frightening progression of ALS:

I personally am glad to see so much attention brought to a disease that clearly needs it.

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.

What are the odds?

24 Saturday May 2014

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{There is some over-sharing below…you have been warned}

So, around the end of March I started having GI issues.  I attributed it to a bug that I may have caught travelling although no one else with me got sick.  After a week or so, the symptoms died down a bit and then returned with a vengeance.  I was having good days and bad days, but mostly bad.  I had to stay in very close proximity to a bathroom regardless of what I ate.  It got to the point recently where I just stopped eating during the day to avoid having trouble while driving or while at work.

About five weeks in I was pretty convinced I was going a bit nutty.  I’m a girl who likes her food.  No food = grumpy Julia.  My PCP ran some tests but nothing was found so I made an appointment with Gastroenterology.  After a visit that included a lengthy discussion of symptoms, they ordered an EGD and colonscopy.  Fun.  The visit was Friday and the procedure was set for Wed.

The procedure went just fine.  The prep was definitely the worst part.  Afterward, the doctor spoke with W and told him that everything looked normal and that there were no signs of ulcerative colitis or crohn’s disease.  All good things except that it still didn’t explain my symptoms.  He said they took a series of biopsies and would be in touch in a week with results.

To my surprise I got a call from the GI’s office on Thursday to give me results.  The nurse told me that the biopsy showed lymphocytic colitis.  Normally they want folks to try Pepto-Bismol tablets for 6 weeks to try to see if it alleviates symptoms, but because of a complication with another medication I am on they ended up prescribing a corticosteroid.  I didn’t get a lot of information via phone and was told to take the meds and follow-up in six weeks.  The office is clearly not yet familiar with the Julia way of processing by absorbing as much information as humanly possible about what is going on.

So, I have microscopic colitis.  It simply means that the colon looked normal, but under the microscope they are able to see inflammation.  It is considered an Inflammatory Bowel Disease and can be caused by a variety of things or it may be auto-immune.  I was thinking a bit about this overnight and started wondering about the odds.  So far I have collected the following:

Multiple Sclerosis – prevalence rate of 100 in 100,000 or 0.1% of the population*.

Idiopathic Intracranial Hypertension – prevalence rate of 1 per 100,000 although that number increases to 20 in 100,000 or 0.02%** when you take into account that I am female and overweight.

Microscopic Colitis – prevalence rate of 100 per 100,000 or 0.1%***.

My conclusion?  I need to play the lottery.  I mean really, what are the odds?

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* UpToDate Article: Epidemiology and clinical features of multiple sclerosis in adults

** Intracranial Hypertension Research Foundation

***GUT: An International Journal of Gastroenterology and Hepatology

Six Month Anniversary

17 Saturday May 2014

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Well, it has officially been six months since my diagnosis.  My partial anniversary.  In the MS world, folks seems to consider you a newbie for the first couple years at least, so it doesn’t mean much from that perspective, but for me it was an event of sorts – a hurdle I have managed to overcome.  Although not wiser, I definitely feel more knowledgeable.  I have sucked up MS related information like a sponge and can rattle off a disturbing amount of information.  I am doing my best to keep up with the research that is available and periodically troll through scientific papers that I only partially understand just to get an idea of studies and outcomes.

A few pieces of advice:

1 – Register with the National MS Society.  Reach out to an MS Navigator.  I registered for this program as soon as I received my diagnosis and was amazed by the knowledge these folks can provide.  They started by sending me a list of doctors, email newsletters and connected me with the local chapter.  I even received reading material via mail including a book for the newly diagnosed that was a huge help.  Understanding the disease itself even in a basic way and hearing as many times as possible how different the experience is for each MSer is so very important early on.

2- Ask for help when you need it.  And you will.  Thankfully my husband stepped up without any requests from me and took over tons of stuff around the house that I was having trouble managing on my own.  I asked for concessions at work and they were kindly granted (As a caveat here, I work in a small environment.  For a larger employer, you may wish to seek advice and be very familiar with your rights before approaching an employer).  I found a counselor when I need one.  Although I continue to be slightly frustrated with some of my limitations, I am not afraid to ask for and receive the help I need.

3 – Find a good support group.  The National MS Society has a listing of local chapters and they should be able to direct you to a support group meeting near you.   If you don’t have any luck there, ask your neurologist or MS specialist or call a social worker through your local hospital.   Before attending make sure you know if care partners are welcome.  Some groups and events are aimed for patients only while others are only for the care partners.  Everyone will have their preference, but since W has been so involved since the beginning, I wanted to find a group that would allow us both to attend.

4 – Assuming you are a newbie, try to find a support group that is geared toward the newly diagnosed or those who are minimally impacted even if it is not the closest one to you.  I was grateful to learn this fact early on from an honest social worker who explained that some of the support groups are made up of folks who have had the disease for many, many years and/or are severely impacted.  Keep in mind that disease modifying therapies are relatively new medications, so many people with MS today went years without therapy.  I think if I walked into my first support group meeting and found most people in wheelchairs and/or experiencing and discussing significant cognitive issues, it would have been a very different experience.  I would have honestly been scared, a bit depressed, and less likely to share.

5 – Connect with others.  I felt so very alone during my diagnosis process.  Don’t get me wrong, I have a hugely supportive family, a wonderful husband and even have remarkable support at work.  All the same, I was the one going through the process and experiencing the symptoms and no one around me could completely understand that.  I’ve only just started to get over this by connecting with others through email, facebook and in person at events.  It’s funny because I am a bit of a hermit yet in this, I seem to need and crave interaction with others like me.

6 – Although I encourage connecting with others, choose those connections wisely.  Early on I joined every facebook support group I could find.  It didn’t take long to realize that the world is filled with many people who, when faced with an obstacle in life, respond negatively.  Don’t get me wrong, some negativity is natural.  I was depressed for quite some time and focused on the worst case scenario.  Then I brushed myself off with some help from W, my family, and a counselor and am trying to move on.  There is a huge difference in that and being negative all. the. time.  It isn’t healthy and it definitely isn’t helpful to be around.  So, I started departing facebook groups one at a time.  Some I left completely, others I just turned off so I am still a member, but I don’t see posts unless I go looking for them.  It helped.

Six pieces of advise from one newbie to another in honor of my six month anniversary.  It’s not cake, but it is my current version of a celebration and I hope others may find it useful.

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!