On April 28th I plan to participate in Walk MS. Most people think it’s because I like to volunteer, support my local community, and I like to stay active. However, my participation in Walk MS is much more than that.
I have MS.
I haven’t talked much about this because I don’t want anyone to feel bad for me or look at me any differently. No matter what I have been diagnosed with I am still just Jamie. But now, I think I am ready to tell my story in hopes that it will help someone else.
For this post, I thought I would educate you about what Multiple Sclerosis is and how I found out I had it. Around 2.3 million people have MS, but I find that it is still misunderstood by the public.
So, let me educate you and bring awareness to MS. Let me help you understand why events such as Walk MS and organizations such as The National Multiple Sclerosis Society are so important.
Get comfortable…because this is going to be a long one.
What is Multiple Sclerosis?
Multiple Sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system. More specifically, the immune system attacks the myelin of the nerve fibers. Myelin is a fat-based substance that insulates nerve fibers.
You can think of your nerves as a power cord. The wires running through the cord are your nerve fibers and the plastic/rubber cover is the myelin. Whenever the myelin is damaged brain lesions form and the nerve impulses to and from the brain are interrupted. This can result in many symptoms such as:
- Vision Problems
- Involuntary Muscle Spasm
- Walking Difficulties
- Bladder Problems
- Cognitive Changes
There are 4 different types of MS. Each type is slightly different depending on the progression of the disease.
- Clinically isolated syndrome – this is basically when you have had MS symptoms once.
- Relapsing-remitting MS – this is the most common type of MS. This type has attacks or flare-ups of new or worsening symptoms. The flare-ups are then followed by periods of remission. While some symptoms may be permanent, for the most part, everything goes back to normal with no more disease progression.
- Primary progressive MS – this type has worsening symptoms with no remissions.
- Secondary progressive MS – this type starts off as relapsing-remitting MS but over time transitions to a progression that doesn’t stop. Neurological function worsens over time.
The cause of MS is unknown. There are many ongoing studies looking at different factors that could cause someone to develop MS. These factors include the environment, genetics, infections, etc. Hopefully, one day, scientists will know more as to what causes the disease.
How was I diagnosed?
I was diagnosed with MS in May of 2010. However, it took doctors 9 months to figure out that is what I had. It all started with a blurry spot in my right eye. It was a dark gray spot that was visible in the lower right quadrant of my field of vision.
I first started by going to my regular optometrist. He checked me out and said everything was fine. He thought I just had a “floater” that wasn’t floating and that it would go away soon. He suggested I give it another month and see if anything changed.
After a month the spot was still there. So, I moved on to an ophthalmologist. They did more extensive tests and all of these tests came back negative – my eyes looked fine.
Next up was a retina specialist where they did more tests. They looked specifically at my retina and the blood flow to my eyes. Again, all the tests came back negative.
Then, I was passed on to a neuro-ophthalmologist. This is where things started to get “real.” Basically, this doctor decides if there is anything wrong with your optic nerve (which is part of your central nervous system). At this point, I had my first MRI and a clearer picture started to take form. While my optic nerve looked ok there were “lesions” in my brain that could not be accounted for. We were finally getting some answers. But, we still had one more doctor to go.
We had finally moved on to my brain, so that meant I had to go a neurologist. The neurologist agreed with the MRI’s findings and the next step was to figure out what was causing the lesions. Because I was so young at the time, MS was not the most obvious answer. Other conditions that the doctor considered were Lyme disease, brain tumors, or B12/copper deficiencies. So we had to do a few more tests – blood work and a spinal tap (lumbar puncture),
The spinal tap is just as bad as it sounds. Fortunately, I was able to have it done with x-ray assistance so the doctor could see what he was doing. The whole procedure lasted for about 15 minutes. The results of these two tests were going to tell me 100% what was going on.
And after 9 months of not knowing…the final results came back — you have Multiple Sclerosis.
That diagnosis was a pretty hard pill to swallow…so basically my body hates me and is deciding to take it out on my brain. Really? I have never been one to give up, so I educated myself and found a good doctor to help me deal with it and I just tried to keep trucking and find a new normal.
Ultimately, because I was diagnosed really early and was able to start the appropriate medication I have a very good prognosis. But, I need to stay on top of it! I HAVE to take my medicine every day, I HAVE to keep track of how my body feels. I HAVE to keep my stress and anxiety under control. And I HAVE to try to maintain a fairly healthy lifestyle (thus, the start of my healthy lifestyle efforts).
How do I treat and manage my MS?
I treat and manage my MS in a few different ways:
- Take my medication regularly – there are many MS medications on the market. Most of the meds are injectable, but more and more pill forms are becoming available. The type of medication you take will depend on the type of MS you have and the severity. I am currently on Tecfidera.
- Take Vitamin D regularly – it has been shown having good Vitamin D levels can help with MS.
- See my neurologist twice a year – if something comes up I see him more frequently.
- Get an MRI once a year – we check to see if any more lesions are visible.
- Get blood work twice a year – most MS medications can be hard on your liver so, liver enzyme levels need to be checked regularly. My Vitamin D levels are checked too.
- Going to the chiropractor
- Practice healthy eating
- Stay active
- Stay up to date on the newest MS research
Even when I do all the things listed above flare-ups still happen. They come on unannounced and usually for no particular reason. For example, the summer after I was diagnosed my whole left leg went numb. I could still walk, but my whole leg had decreased sensation and a pins and needles feeling. (My left knee is still slightly numb to this day.)
Then, in December of 2016, I had the biggest flare up I had ever had. I wrote a blog post about Weight Loss and Illness….I just didn’t mention the MS because I was not ready for everyone to know.
Just before Christmas 2016, I had been having headaches and brain fog for about a week. (Brain fog is really hard to describe if you have never had it. It’s kind of like walking around in a dream – nothing really feels real. Everything is super muted and all you want to do is sleep.) I just thought I was a little run down from preparing for the holidays. However, I woke up on Christmas morning and I couldn’t move the right side of my face. I was opening presents with my family and tried to smile and nothing happened. We immediately went to the ER.
When you have an MS flare up there are three things that happen. 1) You see your neurologist ASAP (even on Christmas) 2) They put you on high doses of steroids 3) You get new medication because the assumption is the old one stopped being effective.
They give you steroids, not because you need to body build, but because you need your immune system to stop attacking your brain. A steroid basically puts a big stop sign in front of your immune system and helps to stop any further damage. Usually, the steroids are given by IV over 2-3 days. In my case, because it was over the holidays, none of the infusion places were open…at least not enough days in a row. So, I had to take the steroids by mouth…which is not ideal. 20 pills a day for a week and one very upset stomach later my immune system had finally stopped overreacting.
These pictures are from January 3, 2017. You can see that I am super bloated from all the steroids (I gained 20 pounds of water weight from those steroids!) and the right side of my face is struggling. You can’t tell but I am putting a ton of effort into smiling for these pictures! Also, these pictures show that you can’t always tell that someone has MS…some medical issues aren’t so obvious.
It took about a month, but luckily everything went back to normal. Now, I am taking a new medication, my brain fog has lifted, the headaches have gone away, and my face is back to moving normally.
As of right now, my MS is in remission. But, there is always chance that without warning it will flare up again.
Supporting MS Research
So in the meantime, I have decided to support a good cause that might help cure MS one day. Scientists are getting closer and new treatments are being put on the market all the time. I look forward to the day that I can say “I used to have MS.” But, for now, I will say “I am living with MS” and helping to fight against it.
So if you are interested in supporting a great cause and supporting my participation in Walk MS. Please visit HERE to donate.
Every little bit counts…even if its only $1. Or, if you can’t donate I encourage you to go to a Walk MS event near you. The walks are really fun and you leave feeling a very strong sense of community.
Thank you for listening to my story. Please let me know if you have any questions. While I am living with MS I am certainly not an expert. However, I can point you in the right direction as far as further resources.
End MS forever. Together We Are Stronger!