And just like that, I am on a new path with my MS.  I finally have written acknowledgement from my Neurologist that I have transitioned into Secondary Progressive MS (SPMS) from my previous state of Relapsing Remitting MS (RRMS). I’ve known it for awhile now but its finally official.  And while it sounds scary, I actually feel ok with it, I have no idea why, but I do.

Multiple Sclerosis doesn’t look the same for everyone and unfortunately the reality is that MS is progressive in the majority of cases.  Most people, like me are diagnosed initially with RRMS but up to 85% move to SPMS after about 15-20 years of having the disease.  I was diagnosed in 2005, so I am right on track for the transition.  You hear a lot about RRMS, but people seldom talk about SPMS. The transition is usually slow, but generally causes symptoms to get worse overall which can lead to more noticeable symptoms or disability. You can go from having RRMS to SPMS at any time, but the process is gradual and, in most patients, slow. In fact, there’s often a grey zone between RRMS and SPMS when you’re moving into the progressive phase of MS but are still having occasional MS relapses.

I have been struggling though with something new since November of 2019 and the doctors have now put a name to my struggle; Occipital Neuralgia and I will tell you that I don’t wish it on anyone. The American Association of Neurological Surgeons define Occipital Neuralgia as a condition in which the occipital nerves, (the nerves that run through the scalp), are injured or inflamed. This causes headaches that include continuous severe piercing, aching, burning and throbbing or shock-like pain in the upper neck, back of the head or behind the ears.  The pain generally starts at the base of the head and goes up to the scalp on one or both sides of the head.  Patients often have pain behind the eye of the affected side of the head. Additionally, a movement as light as brushing hair may trigger pain. The pain is often described as migraine-like and some patients may also experience symptoms common to migraines and cluster headaches. Occipital neuralgia can be the result of pinched nerves or muscle tightness in the neck. It can also be caused by a head or neck injury. Occipital neuralgia can either be primary or secondary. A secondary condition is associated with an underlying disease, (which is likely my case). Although headaches are a common health problem, occipital neuralgia is a specific type of headache. According to the American Migraine Foundation, it is also rare, affecting only 3.2 people out of every 100,000 a year, lucky me right?!

Thankfully though, just last week (after suffering for more than 4 weeks of constant and unrelenting pain and intermittent pain for 9 months) I had a nerve block shot, and while it wasn’t pleasant at the time and for 3 days or so following the shot, I can finally say that it is improving!  Thank the lord, because it has been exhausting, emotional and downright miserable. I think I have perfected the art of wearing an ice pack on my head and going through my day in a hazy fog though.

I was raised to be sturdy, strong and reliable but MS has sure tested my resolve at times.  Even with all that has been thrown my way, I feel that I have met my MS head on and although I have days that I struggle, I will continue to meet SPMS the same way I met RRMS.

As of right now, I am not having relapses like I did with RRMS. I have exacerbation of symptoms, but I am no longer recovering from damage. For example, I have numbness in my right foot that has not gone away. I occasionally have trouble swallowing and finding my words, I get double vision if I have done too much or become overly tired, I have increasing fatigue, my speech is sometimes slurred, I have dizziness and nerve pain and my gait and mobility have changed, it may sound like a lot, but honestly, I am doing amazing and things could be so much worse.  I have recently started a new medication to help with my walking (and its working great so far, I no longer feel like I am carrying around a 100 lb bag of cement on each leg). The transition to SPMS has allowed me to actually stop taking some of the medications I was taking before, which is a win in my books. I am now managing symptoms rather than actively preventing new damage, although new damage is still a possibility and is something that we will keep an eye on and deal with it should we need to, but for now it’s status quo with no DMD (disease modifying drug).   For me though, the worst thing about a SPMS diagnosis is the unknown about the deterioration and slow decline because there is no idea how to know what will happen and how far the disease will go.

Multiple Sclerosis and chronic pain continue to be unsuspecting and sometimes unwanted teachers to me. I am determined to continue to survive and thrive by learning to co-exist with my new diagnosis. Life has gotten slower. I am physically slower, some days I need a cane, and some days I can do nothing more than chill, yet there are other days I can handle 9 holes on the golf course or a walk around the block. But I am often reminded to be gentler and kinder to myself. Chronic disease and chronic pain can rob us of the ability to do just that.  Isn’t it funny how the things we can easily show to others are often lost on ourselves?   The best part is that I see my life as amazing, and I am humbled by my blessings. I try to practice optimism, faith, hope and gratitude and there are days I fail, but the point is that every morning when I wake up, I try. 

For me, adaptability is the key, I know that things are going to be different and they’re going to keep changing. But I know it will not all change for the worse, and not everything that changes will stay that way.  Although I don’t have control over everything, I do have control over what I put my body through and how I tackle my disease. I know that I’m not always going to handle my changing situation in the best way possible and I apologize ahead of time to my family and friends, but I will continue to do the best I can. I will trust in my experiences and I will trust my doctors.  I will learn from it all and grow stronger through it.  I encourage everyone to do the same – we are all stronger than we think, and we can withstand even the toughest storms in our lives.

In my last post, I promised a recipe and here it is!  Self-Isolation is allowing me to spend more time in my kitchen and more time feeding my soul!  Although this recipe is a bit time consuming, it is one that goes a long way (4 sandwiches the first night and 2 noodle bowls the second night). I hope you enjoy it as much as we did!