Limitations

One of the greatest challenges of MS is the unpredictability and uncertainty of what is to come. The effects of multiple sclerosis vary based on which part of the brain or spine is damaged, or more specifically where damage to the nerve-protecting myelin has occurred. As a result, symptoms can be radically different from patient to patient. There isn't any typical MS; everyone's MS is unique to them. It's a very difficult disease to understand. But as you live with it, you need to understand your MS.

Since my MS mainly affects my mobility, I have to be aware of accessibility. I have to be more prepared than before. This takes the spontaneity out of going out. I need to know whether the places that I go are handicapped accessible or not. There’s nothing worse than getting somewhere and finding that you can’t enter because of a stair or stoop. I also need to know whether the restrooms are handicapped accessible or not. This small detail to some is of utmost importance to me.

I am lucky to live in a condo that has a ramp and elevator with a courtyard in a neighborhood that is vibrant and active. I also live near BART (Bay Area Rapid Transit) that can get me around town pretty easily (as long as the elevators are working!) I am also fortunate to have friends that understand my limitations and make a point of coming to me and not letting me feel too isolated. As does my husband and family.

Overall though, I think that there's a limited understanding of what it's like to exist in a less-abled, wheelchair-bound, body. This needs to change. Thankfully, Jason DaSilva of AXS (read: access) Map is bringing us a kind of Yelp for people with disabilities. Creating this viewpoint for those without disabilities is crucial to making a change in society. The disability rights movement needs to gain momentum.

I am thankful that my MS has left my mind unimpaired and I can get around in a wheelchair. But it needs to be easier. There is a fight to be had.

What Next?

In some ways a diagnosis of MS was a relief. I finally had an answer to the myriad of symptoms, aches, pains, and “what the hell’s” I was experiencing. But now I had an incurable disease. What do I do next? I was given prescriptions for drugs that would treat symptoms I was experiencing such as spasticity in my legs, bladder issues, and nerve pain. 

The overall issue, however, was what could we do to stop the progression of MS? There are quite a few DMD’s (disease modifying drugs or DMT’s disease modifying therapies) on the market for Remitting Relapsing MS. These seek to reduce the frequency and severity of flares or exacerbations. They range from subcutaneous (under the skin) injections or intramuscular (into the muscle) injections to oral medications to infusions. You can find a full list here. It is up to you and your doctor to decide where you’d like to start. I strongly recommend doing a DMD because progression can be slowed.

I have tried almost every version of a DMD and unfortunately none of them worked for me as I progressed from RR MS to SPMS. There really aren’t any treatments for progressive MS, although research and clinical studies are making advancements. My neurologist and I discussed them and she prescribed 2 for me. Fingers crossed!

My MS progression began with breaking my ankle in 2010. The trauma, along with the sedentary months ahead, brought upon my most serious exacerbation to date. Once my ankle was healed and I was diagnosed, my mobility went downhill. I started using a cane regularly then moved on to forearm crutches and a scooter. I am now in a power wheelchair. I don’t walk anymore. My legs are heavy and my feet are like bricks. I exercise them but need to remind myself that MS is a neurological disease not a muscular one. I sometimes feel that I could have prevented all this. Could I have? My head says no. My heart… well I try not to dwell in the past ('try' being the operative word). Life is ahead of me today.

Diagnosis

I was diagnosed with MS in September 2011 at the age of 33 which is common. Most people are diagnosed in their 20s – 40s. I was initially diagnosed with Remitting Relapsing Multiple Sclerosis (RRMS) which is characterized by clearly defined attacks - also called relapses, flare-ups or exacerbations - of worsening neurologic function. These are followed by partial or complete recovery periods (remissions). In retrospect, and hindsight being 20/20, I was experiencing symptoms up to 10 years prior. After my first ‘flare’ in 2001 when my legs couldn’t bear my weight, I experienced episodes of weakness, numbness, and unexplained pain. MS is difficult to diagnose:  There are over 50 symptoms linked to MS, and each person develops symptoms differently. Many of these symptoms mimic problems that occur with other diseases. I was misdiagnosed with Psoriatic Arthritis and was treated by rheumatologists for years – specialists often have tunnel vision and don’t look outside their field. Who knows what an earlier diagnosis may have led to – everything or nothing.

In 2013, my doctor casually said, “Since you are Secondary Progressive…” I must have had an expression of shock on my face because she said, “Now don’t go home and mope about it!” My neurologist is smart and my advocate – she just isn’t the most tactful.  But I don’t need tact. I need intelligence and someone willing to go to bat for me, which she does. So in 2 short years, my diagnosis advanced to Secondary Progressive Multiple Sclerosis (SPMS)  - which means that the disease will begin to progress more steadily (although not necessarily more quickly), with or without relapses. Most people who are initially diagnosed with RRMS will eventually transition to SPMS.

There are four main types of MS. RRMS, SPMS, PPMS, and PRMS which you can read more about here.

My MS is unique to me. As Margaret Mead said, “Always remember that you are absolutely unique. Just like everyone else.”