After a single episode of Optic Neuritis in 1994, I was left with a visual loss of 20% in one eye. Not a ‘big deal’ in itself, but then, in November 2005 I began, suddenly, to experience serious problems walking, even very short distances of a few metres left me completely and mind numbingly exhausted and I felt the most extreme fatigue – nothing like I had ever experienced before – which was totally disproportionate to any activity I was engaged in. Very peculiar and unpleasant sensations started to turn up in various parts of my body.
Following an initial consultation with a Neurologist and an MRI scan of the head, he referred me to a Psychiatrist, as he could not possibly consider a diagnosis of Multiple Sclerosis given that the MRI reflected only one lesion in my brain. He discounted MS on that basis alone.
Months later, after consultations with several different Health Care Professionals, more MRIs, this time: brain, thoracic and lumbar scans which showed one lesion in the brain, as in the first scan, and one in the spinal cord at T11, I was finally diagnosed and hospitalized immediately for treatment with intravenous cortisone
Although I wanted to carry on working, this soon became an impossible task as well as driving my car and I was medically boarded in September 2006, by the company I worked for.
My initial diagnosis was revised in 2012 by my Neurologist and amended to Primary Progressive Multiple Sclerosis (PPMS). Due to the fact that MS is such a complex and variable illness, diagnosing PPMS can be difficult, often this is made several years later, when doctors can look back and see what progression has taken place.
I reproduce hereunder material obtained from various professional sources. Some statements reflect exactly how things feel:
People with Primary Progressive Multiple Sclerosis (PPMS) have a different illness, physically and emotionally, than other MS sufferers, says a psychologist with a National MS Society abroad. Talking about all the advances achieved with other forms of MS, she says – The big thing I see is that they feel left out in the cold; almost like the message to them is, ‘It’s not for you’ – not the new treatments, not the new research. They’re even feeling left out by Health Care Professionals, as they hear ‘we can’t do anything for you’.
The experience of PPMS itself is different, too. Unlike people with other forms of MS, who have attacks followed by symptom-free periods, people with PPMS have, from the beginning, been living with a disease that steadily progresses. There’s no “bright side” to PPMS, even though the absence of attacks may make PPMS slightly less unpredictable than other forms of MS, which can strike suddenly and severely. Still, just knowing you’re living with a progressive illness doesn’t tell you how fast or how far it will develop.
Studies have failed to predict who will become disabled and who will not. There’s no test to tell how quickly progression will occur, or what body parts MS will affect. By the same token, nothing has been shown to slow down the progression of PPMS. Treatments for other types of MS don’t work, in fact, the processes underlying PPMS have only recently been discovered and it will take years for research to yield answers and test any new treatments.
Most people PPMS – up to 80% – will experience significant leg involvement, called progressive spastic paraparesis; it’s a gradual stiffening of the legs, walking becomes difficult, and eventually impossible, for many. Rates vary, however data indicates that within the progressive group, it appears that “sooner to cane, sooner to wheelchair”.
Studies of patients with MS that is progressive from the onset provide a consistent message; the clinical presentation generally shows gradually progressive leg weakness, gait instability, and bladder dysfunction. Fifty percent of patients with PPMS will require unilateral assistance to move.
I have now progressed to using my trusty wheelchair indoors as well and it has become a necessity to install an exterior chairlift, as I need to negotiate
17 steps to leave my home, otherwise I would be “house-bound”.
The heat of the summer months and, indeed, even the indoor heating during winter, causes, at best, discomfort: pins and needles in hands and feet and ‘brain fog’, or it can be extremely debilitating.
Taking care of personal hygiene has become a rather strategic challenge. Planning is imperative as I can no longer get in or out of the shower cubicle unaided. After managing to position myself on the wall-mounted shower seat, it will be necessary for me make good use of my scant energy levels and make careful and measured movements if an injury is to be avoided, as I also have spasticity and balance issues. Getting ready on the spur of the moment and in a hurry is but a blurred memory.
Arms and hands have become weaker and are often shaky, fingers are clumsy and lack sensitivity and ‘dropsy’ is a regular occurrence; legs and feet cramp daily and have the ‘jitters’ which cause pain and discomfort despite taking medication twice a day.
The area of my body situated between my waist and upper thighs feels thick and awkward with accompanying backache; I get a painful, pulling sensation in this area and have bladder and bowel issues.
‘Dysphagia’ still causes my oesophagus to go into spasm which is not only painful but very unsettling as food will not go down easily.
“MS does not cause pain” is an outdated and extremely incorrect theory, or should I call it an ‘Urban Myth’?
The infamous ‘MS fatigue’ is ever present in varying degrees.
Some of these symptoms, and so many others, are not always constant or consistent; they come and go at random and I never know what can be expected from one moment to the next. A couple of days ago I experienced the most fabulous day – all day – when my energy levels were noticeably increased and the dreaded fatigue was conspicuously absent … just a 24-hour occurrence though, and the following day these ‘improvements’ were gone again!
I have been living with my friend Di for many years and since my pre-diagnosis days. She keeps our household running singlehandedly and does everything that I can no longer do. She does all the ‘never ending’ – and tedious – household chores, shopping, and a great deal more, which includes having become my carer. Quite a heavy load for one person!
Di is also a talented cook and baker and plates up the most delicious meals for me each and every single day; she is an amazingly nurturing and generous woman and I am so very blessed that she is sharing my life, especially now, under these very difficult circumstances
The financial implications, following disability are staggering! More especially here in South Africa, as absolutely everything has to be personally funded. Government assistance and facilities that are available in many first world countries abroad are not available to us.
All the above may sound like a litany of ‘gloom and doom’. This is not quite so – at least not most of the time. Both Di and I are fortunate enough to have a fairly decent sense of humour which more often than not has a huge impact on the way we see the world as it has become to us.