My Journey Through MS

IMG_1044[If you are here for the Howdy blog, he’s fine, eye getting better, now down to three treatments a day, yay!  I’ve been needing to write this MS blog post for a while now and today it got done.  If you know someone suffering with MS and you think this could help lighten their load, please share it.  Howdy will be back dominating the blog tomorrow.  :-)]

Multiple Sclerosis (MS) seems to be a relatively common diagnosis among horsewoman of the mid- and northern latitudes.  Seriously.  I know at least four professional horsewomen who are diagnosed with it.  I’m sure there are a lot more that I don’t know about.  After all, what horsewoman wants to admit she needs help?  We don’t need help, we are horse trainers, we are riding instructors, we are the care-givers to our horses.  We clean 10 stalls a day, ride the babies and teach the students.  We gallop, we jump, we ride!

Well, I’ve got MS.  These days you would not know it.  I am symptom-free, and officially in remission.  I have a lot of energy, and I am not on any MS drugs.  Maybe it is luck.  Maybe it is research.  Maybe it is middle of the night prayers.  I don’t know.  But I have learned a lot and continue to learn and maybe it will help someone else.

I have Relapsing-Remitting MS (the most common type).  There are other types of MS that are worse than RRMS, and this blog post is not about them.  I have no direct experience with those.  RRMS basically means that you have MS exacerbations (flares) that can affect you for a period of time and then you heal from them entirely or almost entirely and carry on until the next flare.

Briefly, my story:

Woke up one Saturday with no color vision in my left eye.  Everything else fine.  Go to ophthalmologist.  He seems nervous and sends me to a neurologist.  On the way out of that office and walking to the parking garage, I remember something I’ve read somewhere, sometime and in a bolt from the blue, I realize that the ophthalmologist thinks I have MS.  Some weird thing in me clicked and I felt sorry for him knowing I probably have MS.  What a difficult thing to know that about someone you have been treating for years!  (I have no idea where that thought came from at that time, but it saved me from feeling sorry for myself, for which I am grateful.)

I went to the neurologist and we did an MRI.  That was a pretty scary thought, but he wisely advised me to bring my favorite CD (this was back in the day, no mp3s), and they played it LOUD and I didn’t listen to the clacking hulk around me.  I knew later that day that I had 4 lesions.  “Not enough for an MS diagnosis,” but definitely CIS – Clinically Isolated Syndrome – which could develop into MS.  Scary.  I start catastrophising (apparently that is not a word, but it should be.)

“I’m going to end up in a wheelchair.  What a burden I will be to everyone who cares about me.  Will they still care about me if I change so much?”  All of that and more.  Six months of occasional therapy to help me deal with it.  Great investment, that.

And then I had another flare.  I went to Heritage Park Horse Trial in KC, MO, and woke up with double vision on XC day.  Not possible to ride xc with double vision and, though I was confused with why I had double vision, I have to admit, I did not want to ride that course that day because I was honestly afraid of my horse stopping at the trakehner and me getting hurt.  I wasn’t just worried about it, or not sure about it, I was afraid to ride THAT horse to THAT trakehner.  It was very stressful.  Stress is a major factor in MS.

I went to my neurologist that Monday and we agreed that I should go on some immune modulating drugs – daily shots.  This is where things got real.  You can’t be in denial if you have to give yourself a daily shot.

I had to take about a week off of work until my double vision righted itself.  I remember the moment my double vision faded.  It had been five days of lying on the couch listening to the radio or music or books on tape because looking at a tv made me woozy and reading was not possible.  Finally it was a nice enough day that I could sit on the deck in the afternoon and when that went well, I decided to go out to the barn and brush Eddie.  Everything was slow.  Walking was slow.  Finding the right brush was slow.  Forget picking hooves because bending over made me think of tossing cookies.  As I was grooming Eddie, Jay came out and said maybe we should go for a walk ride in the pasture.  Oddly, I was dubious about riding, even on good Eddie.  Sudden double vision is debilitating and demoralizing.  But I was there and so was Eddie and Jay would help so I decided to do it.  We put a saddle on and I got on Eddie and he rode Elliot.  We walked.  I was looking down because looking with double vision at the horizon or another person moving on a horse is a sure way to get woozy and remind yourself how weak and helpless you really are.  As I was looking down, all of a sudden, his withers came into focus.  A few steps more and I could clearly see his mane halfway up.  Then his ears came into sharp focus.  It was so fantastic that I could not breathe or talk.  I didn’t even tell Jay at the time because I realized that I really couldn’t describe it as fast as it was happening, and I didn’t want to jinx it by trying.   After we got off, and I was sure that the 5′ around me of clear vision that I had been given was not going to dissipate, I told Jay.  Over the next few days, my circle of clear vision got wider and wider.  I remember the first time I was sitting in a car and I could clearly see a distant woods and tractor and how miraculous it seemed to me at the time to be able to discern something that is not touching you – what a wonder vision is.  MS gave me a real appreciation for the sense of vision.

I recovered fully from that and then had another relapse a few months later that involved double vision and exhaustion.  I was on the couch for 17 days, and there was one day where I literally had to concentrate to breathe.  I actually thought I would die because I would stop breathing from not having the energy to do it.  It was an odd feeling.  Something in my brain told me that I would not just stop breathing from being tired, so I guessed that I probably wouldn’t die that way, but it felt like I could.  During this time I developed a huge craving for broccoli and kale.  I’m not kidding.  Like overwhelming.  So when I was well enough, I went to the store and bought everything they had that was fresh and green.  I made amazing, wonderful things that we all should be making every day and I felt better and went back to work and riding and found it hard to believe a month later that I could ever have lost 17 days of my life.

But then I realized that, yes, I did lose 17 days of my life and I quite thought that was BS.  I decided that I was going to read up on everything that anybody credible has learned about MS. I can be like a dog with a bone, and I was google searching and pub med stalking, and consuming information like a woman possessed.  I figured no one cared more about my health than I did, so, in the words of a coach at a basketball camp I attended as a kid, “If it is to be, it is up to me.”

The first credible thing I came across was the Swank Diet, and I still use some of these tenants to this day.  Basically, Dr. Swank taught people with MS to follow a low saturated fat diet and it reduced their exacerbations.  He followed their progress for years.  The people who stayed on the diet did well, and those who did not, did not.  The general plan is this:

  • First year, no red meat
  • Lots of fresh greens
  • Chicken, fish
  • Add monounsaturated fats and long chain fatty acids
  • Cod liver oil every day

This actually worked for me, and after a year, I felt really well and my neurologist and I  thought it was reasonable for me to go off the daily shots.  (Yay!)  I did, and did fine.  The hardest part was the cod liver oil daily, but I figured I could handle that if it meant I wouldn’t have to think to breathe ever again.  (We all have our own motivations.)

[Side note about going off the shots.  The decision to quit using Copaxone (there I said it) did not make the pharmaceutical company happy.  When I called them to tell them to cancel my next ($1k per month) shipment of shots, they used outright scare tactics to try to get me to continue.  I laughed at them and threatened to record the call and ask a lawyer if these tactics were legal, as they certainly weren’t ethical.  There was a lot of back-pedaling, though I noticed, no apology.  After that, they sent me letters twice a week, proclaiming how I was going to have exacerbations and horrible things were going to happen to me.  Had I cared enough, I would have sent them a nice flowery “Get bent” wallhanging.  I might have learned needlepoint for that.  After a few letters, I asked Jay to throw any letter from them in the garbage on his way from the mail box, which, bless him, he did, and I never even heard that we received them again.  I can not to this day understand how a company whose literature claims they are in support of “Your MS Journey” could justify attempting to dramatically increase the stress on someone who has a disease that they are well aware is stress-related.  Methinks they did not think that one all the way through, if they really cared about “My MS Journey.”  Just perhaps they didn’t actually support me not having MS symptoms anymore, because a disease in remission doesn’t make them $1k per month.]

Back to the Swank diet.  The thing that stuck with me about the Swank book was the studies he shared in the beginning – some information about MS.  The first thing was that MS is more prevalent at high latitudes (north of 40 degrees N latitude or south of 40 degrees S latitude.)  What happens at high latitudes?  The sun shines less directly.  So what?  People’s bodies don’t make as much vitamin D. (In case you missed it in science class, human bodies make vitamin D when sunlight strikes the skin.  I don’t mean to be snarky there.  Some people don’t know that, and that’s ok.)  Vitamin D is involved in many chemical reactions in the body, can turn genes on and off, and much more.  Anyway, you don’t get enough of it from sunlight if you live in the northern latitudes.  hypo

I was intrigued by that, so I did a search on prevalence of MS in the US:

us

This is a pretty crude map, but it shows, in a general sense, how location is a factor in MS.  So then I really started thinking about it.  And reading about it, and pretty much being obsessed by it.

I joined the Vitamin D Council and read everything they had about vitamin D and MS.

And then the day came when I could feel my next relapse coming on.  Just a distant sense of “not-rightness” along with some passing moments of exhaustion.  These symptoms were the bellwether for an exacerbation and started happening about three days before one started.

I was in a panic.  I did not want to go there again.  Who knew if this would be another 17 days, a month, or the one that turns into Progressive MS (which would be seriously Not Good.) Then I saw this video.  It is 8 minutes long, the lighting is bad, and it is just a guy talking.  It changed my life.

After that I googled Rheinhold Vieth and read all of his work – formal and informal.  The man is a genius.  If you do nothing else, watch the above video.

So, feeling the flare coming, I went home and (I do not recommend this. You should not do this) took 70,000 units of vitamin D.  The next morning I felt a little better.  I then took the same amount for the next five days, (no, don’t do that either) and my impending flare just dried up and died.  I was so happy!  AND, I was so embarassed!  What a stupid thing to do without medical supervision.  I went in and fessed up to my neurologist.  He was briefly annoyed and then he asked me how my experiment went.  We laughed.  He said we needed to do a vitamin D level check on me and then we’d work together to develop a dosage to keep me at a good level.  (‘Good level’ is higher for MS people than for people without, and can vary individually even among MS people.  I can’t give you a number, other than saying it is higher than 50. One thing MS does is it teaches you to pay attention to your body.  This is another hidden blessing of MS.)

Meanwhile, some other information has come to light which supports the importance of vitamin D to MS.  Birth month: a spring-born baby is much more likely to develop MS than a baby born in another season.  Mothers who give birth in spring have gestated their babies in the months when the lowest levels of vitamin D are circulating in their bodies.  I was born in May.  My sister, who also has MS, was born on June 1.

borninmay

 

A look at vitamin D levels as they vary seasonally

graph

That’s a pretty impressive sine wave, ladies and gentlemen.  Vitamin D levels crash in September, October and November; and this is the time of year that I had all my flares.  Apparently for me it is the change in vitamin D level that caused the most difficulty.  That is just me.  MS is different for everybody.  As a result, I now supplement just a bit in summer and quite a lot in winter, starting in September.  I used to supplement a lot in summer too, but I was monitoring my levels with my neurologist and my levels got a little too high.  Ok to do that short term, but the long term repercussions of very high vitamin D are somewhat unknown, so I just don’t go there.


Other things (besides eating well and managing my vitamin D) that have been useful for me in managing MS:

  • Kefir – get the gut right, the body follows
  • Actively find relaxation:
    • Sure, go and do.  Then pause and breathe and appreciate. Then go and do again, if you like.
    • Do yoga
    • Meditate (Bhuddify) 5 minute of daily bliss
  • Make better decisions: Stop consistently putting more energy in than you get out. (of relationships, of your kids, of volunteer commitments, of tv, of whatever)  If it doesn’t build you up, limit it.  Note the energy sinks in your life and make decisions about them to free up some self care/attention/love time in your life. Notice what makes you truly feel good/blessed/loved and do that.
  • Take at least twice weekly epsom salt baths.  Seriously.  These can be short, yet effective.  Epsom salt is magnesium (Mg) sulfate (SO4) and it can be absorbed transdermally (through your skin). Studies have shown that as little as 12 minutes in a hot epsom salt bath can increase Mg levels in subjects, and Mg is probably  important in MS.  Sulfur (from sulfate) is handy for a body too. Grandma was right – go take an epsom salt bath, you’ll feel better.

 

Advertisements

10 thoughts on “My Journey Through MS

  1. Wow Camie already thought you were strong now I know you are super strong

  2. Carrie Hellestad

    Sure glad you are in charge of research, I probably wouldn’t have been as dedicated with this as you were. Correct diet, 10,000 iu Vitamin D in low sun months, limit/avoid stress, and rock on. I certainly wouldn’t be doing this well without you. Thank you.

  3. chrissy killough

    My friend just shared this blog with me as I was recently diagnosed with MS. This was very encouraging. THANK YOU!!! I have found a high dose vitamin D protocol that I am doing developed by a Neurologist in Brazil. He’s been doing it for about 15 years. He’s an MD with a PhD. VERY exciting stuff. I am only on it for a short bit, but there are wonderful stories in our FB group. We do lots of Vitamin D and Magnesium. SO this was just very encouraging to read about your success with what you have done. Thank you for sharing your story!!!

  4. moonlighter3@frontier.com

    So VERY interesting. What a great researcher you are.

  5. You are such a hero for MS patients. My father and sister both passed away from MS and had they known what you have discovered about vitamin D, they may still be with us today. We grew up in South Dakota which has a lower amount of sunlight (vitamin D). You are a wonderful person to not only share your difficulties with MS, but also share your success with dealing with it. I respect you immensely. Thank you.

    • Hi Dan,
      I’m sorry about your father and sister and the journey you’ve all had to go through. I wish we could have known this earlier too.
      Peace to them and love to you,
      Camie

  6. […] this week, I wrote the MS blog that I’ve been wanting to write for, oh, about five years.  After getting that out, I just […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s