My Personal Battle With Multiple Sclerosis

When I was 27 years old, in a matter of 3 days, I went from being very physically active and working on becoming a personal trainer, to not being able to walk. I started out limping, and gradually it got so bad even a cane wasn’t enough. I was confined to a hospital bed, almost overnight.  Eventually, I was diagnosed with multiple sclerosis.  I was told it would likely change to Progressive MS, and I’d probably be in a wheel chair by the time I was 40.

Starting in 2006 I started trying holistic treatment options, beginning with acupuncture.  That was really helpful.  After a session, I felt motivated and loaded with energy.  When I had my first symptom flare of 2006 I decided not to call my neurologist, even though I could barely move.  I had overheated walking around town with the man who would later become my husband.  All of a sudden, I told him I couldn’t walk anymore and I needed to sit down.  Pins and needles were all over my body, and I felt like I was on fire.  I couldn’t control my left leg at all.  While I sat in shade, he ran to get the car to rush me home.  Because of the benefit I’d had with acupuncture, I decided to try that instead of the steroid drip this time.  Previously, these exacerbations would have me out of commission for 1 to 3 months.  I went to acupuncture every day and by the end of a week I was already feeling normal again!

MS for me, meant a constant limp, constant pain, constant brain fog and cognitive disfunction.  A symptom flare meant these symptoms would get worse. Kind of like the difference between a headache, and a migraine.  Most of the time I didn’t need my cane.  I could manage the limp without it.  When I got fatigued, over-stressed,  overheated, or just plain over exerted myself somehow, then the symptoms would intensify, and I’d need my cane.  In addition to needing the cane, it was the most intense fatigue you can imagine.  Sort of like when you have the flu and you can’t get your body out of bed.  I felt like I weighed 1,000 lbs and my body was made of lead.  And forget being able to think, or pay attention to anything.

I used to go through this twice a year, every spring and fall.  It seemed to be triggered by seasonal allergies or something.  Twice a year, I was bedridden for at least a week, then very slowly, over the next several weeks (sometimes months) I’d begin to recover.  Recovery didn’t mean back to how I was before I got MS though.  Recovery meant going back to functioning without a cane, but still limping, not being able to work out (because I’d always push myself too hard, then cause another flare), not being able to be out in the hot sun for any real length of time.  It meant that extreme mid-atlantic humidity was not just an annoyance, but a health risk for me.

I didn’t want that to be my life anymore.  Because of acupuncture, I was opening my mind to more holistic options.  At the age of 36 I got pregnant and was able to stop most of my MS meds.  I was doing daily injections of Copaxone, and was thrilled that I was allowed to stop!  Once the baby was born, I had no interest in going back on those shots, or the other drugs I’d been taking.  I wasn’t off everything at that time, but I wanted to see if I could try to manage the MS without adding the ones back that I had been allowed to stop.  I started researching diet, which meant eliminating things, and then a few years later I started learning everything I could about nutrition, which means adding things.   With a modified diet, we have to focus on what things we can’t have.  I felt so deprived!  After a friend suggested I switch from drug store vitamins to something medical grade, it felt like my eyes were opened to the world of nutrition!   After a few days on better vitamins I realized I had so much energy!  I felt more energy and mental clarity than I had since being diagnosed 13 years before.  Instead of focusing on buying “replacement foods”, I was now focused on buying nutrient dense, organic foods, that made me feel better.  And I spent a lot of time reading what nutrients and supplements were supposed to help MS, or my specific symptoms.   My doctor was on board with what I was doing, but was anxious to get me back on my meds, once we were done trying for baby number two.

At the age of 40 I had my second baby boy.  The pregnancy was very difficult, I was so sick there were few things I could keep down, and all my diet modifications went right out the window.  I gained around 70 lbs because I was almost immobile during that time, and was not eating good food.  Probably due to my poor overall health and weight gain, labor and delivery caused a nasty MS exacerbation.   I was barely able to walk for months, couldn’t carry the baby in his car seat, couldn’t get up and down the stairs without help.  At that time I was taking the drug store prenatal vitamins, and this is when my friend suggested I upgrade to something better.  As I previously mentioned, I started feeling better within a few days, and it gave me the motivation to get back to physical therapy, get walking better again, lose that baby weight, and get back on the road to feeling better!

We need these little encouraging moments, in order to keep us on track, and help fuel our motivation and mindset!   It has been 17 years since I was diagnosed with MS.  I’ve gone from a constant limp, and biannual exacerbations, to not needing my cane since 2012, and being off every single pharmaceutical medication since 2013!  It’s baby steps.  Having the patience and perseverance to try things, stick with them, and do something every day to promote healing.  It took years of trial and error to get where I am today, and I’m still fine tuning!  I’d like to get to the point where I can get back to the gym, and really give it my all, without the risk of overdoing it, overheating, and causing a nasty flare.

If you’ve got MS, please stay in touch with me here, on on my FB Page.

Rebecca

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