Tag Archives: ms

How Life Has Changed

21 Saturday Jun 2014

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A disease called Awesome

Back in the day (ie last year), I used to spend time with others talking about a book I’d just read or a movie I watched.  We’d basically talk about meaningless stuff…and at the time it seemed to matter.  W and I used to love to travel to retail shows selling our soap and chat with people spending hours outside.  We would tend the garden or go for walks.

Flash forward to now and I’m amazed at how my life has changed.  I find myself in conversation with folks and I’m not sure what to say.  If they are fellow MS’ers, we chat endlessly about doctor’s appointments, our favorite MRI machines, wait times, new treatments, and infusion centers.  Non MS’ers?  I honestly draw a blank.  I can still chat about whatever TV show I watched recently or book I just read, but my reading list has adjusted to include a few more health-related books then I would like and any TV show discussion tends to morph as health enters the picture as in “well, after my last infusion I was on the couch for two days and watched an entire season of X” (<– insert favorite show here).  I’m afraid to do most retail shows now because I never know when I’m going to hit a certain level of exhaustion that just requires me to stop and I definitely can’t do much outdoors since I have developed the wonderful ability to overheat at a moments notice and tend to have trouble functioning when it happens.

Other-People-in-my-Age-Group

I feel like a person who is losing touch with reality.  Or maybe I feel like those around me have lost touch?  I would like to say that being diagnosed with a chronic illness brought new meaning to my life, and some days I honestly feel that way, but other days I just feel spent and a bit lost.  Like I became old overnight and left all the people my age behind.  I just don’t know how to relate to them in the same way anymore.  It sounds awful (and I promise I am not an awful person), but their complaints about relationships, daily life, and work can make me angry.  They just seem trivial when looked at from a different vantage point.

I know all my anger and frustration has nothing to do with the person doing the talking and everything to do with me and my choice to interpret their words in that way.  I know it is unfair of me and I imagine it is simply my grief once again manifesting itself in my life. I recognize it as something I need to work on and I hope that as I continue to improve illness can take a backseat in my life and I can return to the banter of daily life with a real, legitimate smile on my face.

For others with chronic illnesses who have been through this battle, does it get easier?  Any tricks to that may help to ease me back to the other side?

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.

Rituxan infusions Galore

07 Saturday Jun 2014

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This week I had the first of two Rituxan infusions.  My last treatments were in Nov and Dec of 2013 and they tend to aim for every six months.  I apparently have little recollection of the actual experience last time.  By that I mean: I was feeling so bad MS wise at the time, that I associated most of the physical portion of that experience with my MS instead of the infusion itself.  W suggested that I document it a bit better this time so I’d remember more going forward.  Smart man.  🙂

On Wednesday morning we headed to the neuro clinic bright and early for a quick visit with the nurse practitioner.  Rather than an actual medical visit, this is a pre-Rituxan visit and basically is to ensure that there are no concerns that should stop them from authorizing the infusion.  We talked briefly about my recent GI problems and she decided that it was likely unrelated.  We even discussed that if my CD19 & 20 counts stay at zero, we may be able to consider just one infusion every six months instead of a set of two going forward.  She checked all my labs and took another urine sample just to be safe.  She listened to my lungs, my heart, and felt all my lymph nodes for swelling.  At the end it was decided that I was okay to proceed (yah!) and we headed out.

We arrived at the CMC Infusion Center a few minutes after my actual appointment time because of the neurology visit.  They were gracious and just ushered me right in and gave me a big, comfy chair.  Kathy, one of the amazing nurses there, came over and wrapped me in blankets and placed a heating pad over my arm.  Not only does this feel lovely, but it helps them to get a good vein the first try.  I tried to relax while I warmed.  After a few minutes she returned and started the IV.  She took vitals (my blood pressure was high, but it is always high when I go for an infusion), asked some medical questions, and we were off.

The infusion begins

Before the Rituxan infusion, they give pre-meds.  The goal is to head off any possible side effects.  Each doctor/infusion center seems to have their own pre-med protocol, so yours may be slightly different than what I describe.  We started with some fluids, and then she switched over to 100mg of hydrocortisone (solu cortef) which is used to reduce inflammation.  Once it was started, Kathy popped out and allowed W to come back and sit with me.  The whole pre-W experience was only about 30 minutes.  The steroid takes about 30 minutes I believe.  Things get a bit fuzzy here for me as the meds take over a bit.  When the steroid is done, Kathy flushed the line and then gave me two tylenol to take (this reduces the likelihood of fever/chills and headache) and started the 50mg of IV benedryl (to reduce an allergic-type reaction).  This burns a bit going in, but in spite of that, this is when I really float away.  I am extra sensitive to Benedryl.  On the rare occasion I have to take it, I take half of a pediatric dose if that gives you any idea.  So, after the IV, I spend about an hour with my eyes closed.  Not quite sleeping, but definitely not functional.

Kathy flushed the line again after the benedryl and then the Rituxan begins.  This is administered very slowly to begin and then the infusion rate increases over time.  Every 30 minutes, Kathy would visit to take my blood pressure and my temperature and ask if there is anything I needed.  They are incredibly attentive and it is much appreciated since you are basically spending the day with them.  We always bring our own snacks and drinks, but they do have a little snack area with sodas and crackers and will order lunch for anyone who is going to be in the infusion center during lunchtime.

When the Rituxan is done, they do a quick 3 minute flush, remove the IV, and we were ready to go.  All told we were there 6 hours – much better than the 8.5 hours of my first infusion.  A few related notes: although tired at the end, I was ready to be up and around.  It’s hard to sit still that long regardless of how comfy the chair is.  Second: Rituxan can drop your blood pressure.  I came in very high mostly due to being nervous about the infusion (143/101 or so) and when I left I was 105/64.

W & I got in the car and headed home.  We stopped on the way at a natural food store, the Organic Marketplace, that has a little cafe and ordered food to go for dinner.  I decided to walk upstairs to the store and pick up a few things.  Bad idea.  The walk up two short flights of stairs left me hot, dizzy, and faint.  I’m not sure if that was a blood pressure problem, or I was just way more tired than I expected.

When we got home I took a quick shower and asked W to stay in the bathroom with me just in case I got dizzy again.  All was well.  I put on PJs and crashed in front of the TV.  We ate dinner, watched a few shows, and went to bed.  At that point I was feeling fine, just tired like I’d had a very long day at work.  The only thing I noticed was some residual soreness running from my arm where I IV was up into my shoulder.

I slept for 12 hours.  Not typical for me.  Lately I’ve been lucky to get 7 hours straight.  I woke up feeling worn out and sore.  I think those with MS will understand, but it just feels like I pushed myself a bit too hard yesterday and I’m out of spoons.  My body is achy and it takes a ton of energy to do anything.  My big goal is simply to get something small to eat so I can take my daily pills and then crawl back in bed or crash again on the couch.  I’ll probably spend most of the day sleeping.

As a side note, all this excitement happened on my birthday.  W was wonderful and ran out to pick up a special birthday lunch and some cupcakes so that we could celebrate in spite of the fact that I spent the day strapped to an IV pole.

So, although technically you are able to return to work the day after an infusion, for me that is just not the case.  My body needs an extra day to rest before returning to normal life.  This isn’t the case for everyone – in fact, based on feedback on the Rituxan facebook group, this varies pretty wildly.  Some folks go right back to work whereas others feel a bit rough for a week or so.  W tells me that I typically don’t start feeling like myself again until day three.  I scoffed at him when he told me that last week, but my memory has been refreshed and I completely believe him now.  I head back to the infusion center again in 15 days for the second in this set.

After all is said and done, I am still immensely grateful.  Some folks give themselves injections daily.  Others take pills that can have strange side effects.  This med is only administered once every six months.  Not only that, it is keeping my MS completely at bay and allowing my body the time to try to heal the damage that was previously done.  Who can ask for more than that?

Update 6/11/14: I ended up taking an additional day off work that I didn’t plan (yep, W was right!).  I had the infusion on Wednesday and wasn’t feeling like being up at all until Sunday, so it took me a full four days to get my energy back.  Today is Wednesday one week later and I’ve felt great for several days other than a small amount of residual soreness through my shoulders and legs.  I did notice that my MS symptoms have flared a bit in the week since the infusion and I had to increase my gabapentin dose again to compensate.  Since I had previously weaned myself down to 300mg/day, increasing wasn’t a problem at all.

Another First: Support Group Meeting

10 Saturday May 2014

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Since Oct of 2013, W and I have experienced a ton of firsts.  My life has revolved a bit around weirdness and unexpected things and every once in a while it just still catches me off guard.  I may pause while taking my nightly pills and wonder how I ended up this way, or giggle strangely sitting in a specialist’s office when I look around and realize I am the youngest person in there by at least 30 years.

With all the crazy firsts, there have also been plenty of amazing ones.  Last month, W and I attended our first MS support group meeting.  It was something that I wanted to do, but things kept getting in the way.  The closest meeting to us is about 45 minutes away and is only held mid week in the evenings.  As I was battling fatigue, it was hard to convince myself that this was a necessary step.  We’re lucky enough to have a support group that is specifically for the newly diagnosed, so this time we told ourselves we would go regardless of the circumstances, and so we did.

I can’t express enough how wonderful it was to be in a room of other MS patients who were just talking about whatever was going on in their lives.  Some talked about medication, others about frustrations with doctors or new symptoms and overall stress.  The group leaders are a husband/wife team who are amazing and took the time to make sure that everyone in the room talked even just briefly.  I am not one to speak in public, even in a small group setting like this, but they encouraged me to talk about Rituxan as they have not had anyone in the group on that particular medication.  I spouted off an abbreviated version of my story, a bit about the medication and my experience with it and answered some questions.  I even managed to get a few giggles from folks while I was talking.  Everything is confidential, so I felt totally comfortable sharing and honestly am incredibly excited to go back.

A New Stage of Denial

03 Saturday May 2014

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I’ve hit a funny place mentally with MS.  This is going to sound very weird to anyone who does not have the disease, but I feel pretty good overall and it is strange.  I imagine this means I have officially hit the remission period that is referred to in the name Relapsing Remitting.  That’s great news overall.  It means that I’m exercising, that my pain has diminished enough that I’m only taking meds at night and a lower dose then I was recently.  It means that I don’t feel like I need to sleep through every weekend just to recover from the week before.  I finally find myself forgetting that I have MS.  Although it plays a major role in my life, I’m finally able to focus on other things.

But all this also means that I hear that lovely little voice in my head piping up again and I find myself asking a million questions.  Maybe the disease wasn’t as aggressive as we originally thought?  Maybe I don’t need to continue my Rituxan therapy?  Maybe this will be how I’ll feel from now on?  And, my personal favorite: maybe I don’t really have MS?  Maybe the well-educated, incredibly knowledgeable doctors were all wrong?

I’m quite familiar with the little voice in my head that likes to send me down anxiety-ridden paths.  I am also realistic.  The reality is that I have amazing doctors and the Rituxan is doing its job.  It has halted the disease process.  My body is focused on healing instead of attacked itself.  I am swimming more which helps to continue reducing my pain levels and also helps to minimize the fatigue.  Things are good.  Rather than allowing myself to enter a new stage of denial, I need to enjoy and celebrate this period of remission and recognize it for what it is.

 

Travel is hard

06 Sunday Apr 2014

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Since we spent our vacation money this year on MRIs, doctors visits and meds, my parents were kind enough to allow us to tag along on their vacation and even offered a companion ticket to cover one of the airfares.  So, we headed down to Florida with them recently to stay in the Fort Myers area.

I have been doing fairly well controlling pain and battling fatigue as long as I am mindful of getting tired and stop in advance of crashing so I wasn’t terribly worried about the trip.

It took me getting to the airport to realize that travel can be much harder than I expected.  My dad dropped us off at the door with the bags while he headed off to park and we went inside.  We checked most of the bags and carried on only camera equipment and my laptop.  All was well until we got through security.  Airports make people slightly scattered and I found myself having to pay extra attention to what was going on around me.  Folks stop, turn quickly, put things down without warning, and change direction.  I felt like I was in a human version of paperboy (that reference was brought to you by the 80s).  I found myself getting very tired very quickly and my ankle started to hurt from all the sideways movement and extra walking.

Since I have a US Airways card, I was given automatic early boarding.  Once on board, all was well until we landed.  I purposely sat in my seat until most everyone was off the plane so I didn’t have to stand longer than necessary or fight folks for space.  We headed to collect our bags and the walk was long.  Again, my ankle started hurting and my calf started to cramp a bit.  We then found out that the rental car pickup was on the other end of the airport.  I honestly wasn’t sure I could do it, so W headed off and borrowed a wheelchair.  I carried the heavy bag on my lap and off we went.

It was officially my first time being in a wheelchair by choice and it was just as humbling as you would expect.  All the same, I was immensely grateful that the airport made it available.

Getting Good News

23 Sunday Mar 2014

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Since mid October it has felt like every doctor’s visit was a dread-filled experience.  I left each feeling despondent and generally depressed.  For the first time, I got good news and I was honestly unsure how to process it.

W and I went for a three month Rituxan follow-up with the MS specialist.  I had an MRI that I was quite concerned about since the report showed a lesion at T2 that had not previously been present.  The neurologist sat down with us and the MRIs, pulled up the old scans and the new and told us that she didn’t believe there was a lesion at T2.  She could see it only on one sequence, so her guess is that it may be an artifact or something else, but if it were a true lesion, it would be more visible that it was.

That alone produced a huge sigh of relief from me.  Several weeks of mental anguish turned into nothing with a few words from the doc.  As if that wasn’t enough, she went on to say that she believe I didn’t originally have one long lesion as we had understood, but quite possible two smaller lesions and that both were improving.  Yep, improving lesions.  It was something that had been cautiously mentioned as a possibility early on when I started treatment, but we were warned numerous times that it may not happen.  So, in short, the Rituxan is doing its job.  It stopped the disease process and allowed my body the chance to begin to heal itself.  Kind of amazing if you think about it.

To add icing on the proverbial cake, my CD20 count is still negative.  That means that the Rituxan is not only doing its job, but it is lasting in my system meaning that I won’t have to treat again until June.

Of course, the little part in my brain immediately started talking to me and warned that I shouldn’t get too excited or too comfortable as the MS can rear its head anytime, but the doc shared with W & I that in clinical trials 90+% of patients didn’t experience a relapse if their B cells were kept in check.

I did ask about pain & fatigue control and was told “exercise, exercise, exercise.”  Per the doc, exercise helps pain control in all cases except traumatic injury.  That was new knowledge for me and pushed me back to the Y to take on swimming again.

So at this point I am focusing on staying positive, trying to be healthier, and hoping that my symptoms will begin to improve as my body continues to try to repair the existing damage.

Working through the Shoulds

22 Saturday Feb 2014

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I am up ridiculously early for me.  My left calf muscle decided, all on its own, to seize this morning just before 5am.  Not just once – which is enough to wake me from a peaceful sleep and send me heart racing as I squirm and try to get it to loosen – but twice.  Just as I was starting to be able to breathe again, and the pain was receding, it came back with a vengeance.  Needless to say, as soon as I was able to walk on it again, I got out of bed.  A bruised, sore feeling and some burning is all that remains of the pain, but there’s no returning to sleep after that.

In my last post I was struggling with the What Ifs and the Shoulds.  Although I felt like I worked through the What Ifs by following them to their conclusion and taking the power out of the fear, the Shoulds were still hanging out there, dangling just above my head.  I used to do a slew of things before some random force outside of my control drew a line in the sand and said “remember the things you did before October of 2013?  Well, you’re not really going to be able to do all those anymore.”  It just seems crazy.  And unfair.    

Why are the Shoulds such an issue for me?  Well, it seems that Should is to black and white, too set in stone.  When you should do something, you either do it (success) or don’t (failure).  There is no room for an in between.  The fact that I can’t work over 40 hours without physical consequences became a failure on my part mainly because of the vocabulary I was choosing to use.

So, how do I combat this?  It seems easy enough once the solution was shared with me – simply replace the word.  As an example:

  • I should be able to swim half of a mile without feeling tired.
  • I would like to be able to swim half of a mile without feeling tired.

See the difference?  This was another enlightening moment for me.  Instead of feeling like a failure, if I swim only a quarter of a mile this week and then I’m tired, that’s okay, but next week I’ll try again.   Now my brain is off and running creating lists of things that I would like to do:

  • I would like to swim at least twice a week
  • I would like to practice yoga at least three times a week
  • I would like to continue blogging/journaling at least once a week
  • I would like to continue working as long as I can manage it
  • I would like to be able to do fun things on the weekend instead of spending it in bed
  • I would like to attend more events (ex: plays, concerts, etc)
  • I would like to travel again

From the mundane daily things to the big life plans, a simple change of words creates an opportunity for the goal/plan to be met halfway and makes the whole experience so much more positive and empowering. 

What to read more?  Other arguments for moving away from the Shoulds:

  1. Psychology Today
  2. Daily Good
  3. Mindful Communication

Battling the What-Ifs and the Shoulds

16 Sunday Feb 2014

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My recent mental craziness centers around two types of problems: the What-Ifs and the Shoulds.  As an explanation, for the last however many weeks since my upsetting MRI, I’ve been playing a not so fun game in my head that goes something like this:

  • What if I wake up and can’t feel my legs or arms?
  • What if I am confined to a wheelchair?
  • What if I start to experience cognitive decline?
  • What if I can’t keep doing my job?
  • What if I get to the point where I can’t work at all?

These panicky questions are often followed by or related to a series of self criticisms:

  • I should have been able to work over 40 hours this week without feeling exhausted
  • I should be able to work during the week and still do fun things on the weekend
  • I should have been able to walk the loop at the park without my ankle locking up
  • I should have been able to swim for more than a half mile before feeling tired

Basically, my brain is running through all my current fears about my disease.  I am a control-oriented person and this disease has removed a large part of that control from my life.  It has also caused me to re-think my definition of myself and my expectations.  I used to be someone who loved to work.  Stressful situations energized me, long hours didn’t faze me, and I always knew I could push myself a little harder.  That is clearly no longer the case.

I could feel myself getting more and more sad as these thoughts ran through my brain and I knew it was counter productive.  So, recently my husband and I sat down and talked through my fears:

  • What if I wake up and can’t feel my legs or arms? – We would go to the hospital.  We talked through which hospital and who would be notified.
  • What if I am confined to a wheelchair? – We live in a single story home, so although there would need to be changes, they wouldn’t be too extreme and we discussed the few updates that would be needed.
  • What if I start to experience cognitive decline? – I joined Lumosity shortly after my diagnosis.  Right now I have only one brain lesion.  My hope is that the lesions will stay minimal and if I continue playing Lumosity daily, I would (in theory) be able to notice a downward trend very early & discuss it with my doctor.
  • What if I can’t keep doing my job? – We discussed the possibility of me working limited hours or working one day a week from home to try to continue in my current position as long as possible.
  • What if I get to the point where I can’t work at all? – This would be a worst case scenario for me as I have realized that much of myself is wrapped up in my job and doing that well.  All the same, we looked at a budget and talked about what it would mean to us financially for me not to work.

Although the conversation was uncomfortable, in a short time we were able to talk through each of the large concerns I have and come up with rudimentary plans or at least early thoughts for each.  It doesn’t change my level of control, but makes me feel more confident that if any of those situations presented themselves, we would manage to work our way through it.

So, I’m left with the Shoulds and I’m still not entirely sure how to handle them.  I am setting up expectations for myself that are not necessarily realistic and I need to come to terms with that.  I am very afraid that I will switch from the woman who worked full time, got a masters degree and simultaneously started a home based business to a woman who sits at home and complains about what she can no longer do.  Instead of thinking about those fears, I need to try to refocus on little victories.  Every day that I manage to go swimming or do yoga should be a considered a success regardless of the distance or time.  Every day that I work, even a short day, is a good day.  If we manage to do one fun thing every weekend, that should be something to celebrate even if it means that one day a week is spent resting just at home.

I imagine this is all part of acceptance and I’ll get there with time, but it is still a frightening journey.

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!