MS – Eying up the Future

I haven’t written much about my MS lately, primarily because up until about July this year it just bubbled along in the background.  Always there, sometimes painful and a bit debilitating but on the whole, not causing me too much grief.  I was diagnosed with MS when I was 56 which is unusual because the first symptoms of MS typically occur between the ages of 20 and 40, but for me it coincided exactly with the beginning of menopause which started when I was 52.

Although I knew nothing about MS when I was first diagnosed, I quickly learned that everyone with MS experiences it in their own unique way.  I guess that is the case with a lot of diseases but there really aren’t any general rules or expectations on how quickly your MS will progress and the symptoms you experience won’t necessarily be the same as someone else’s with the condition, regardless of the type of MS you are diagnosed with.

MS has been grouped into four different categories, summarised and simplified as follows:

Relapsing-remitting

The most common type of MS.  Approximately 85 percent of people with MS have this type at the time of diagnosis which is signalled by clearly defined relapses or flare-ups with partial or complete remissions or recovery periods when the disease moves out of the active phase.

Primary-progressive MS

This form of MS progresses slowly yet steadily from the time of its onset. Symptoms stay at the same level of intensity without decreasing, and there are no remission periods and patients experience a fairly continuous worsening of their condition.

Secondary-progressive MS

Initially this may involve a period of relapsing-remitting activity, with symptom flare-ups followed by recovery periods. Yet the disability of MS doesn’t disappear between cycles.  This period of fluctuation is followed by a steady worsening of the condition.

Progressive-Relapsing MS

 A rare form of MS diagnosed in only 5% of sufferers, this is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.

I was put under the heading of Primary Progressive MS, a diagnosis that I’ve never found particularly helpful to be honest.  Evidently this is the category that most late-onset sufferers (people diagnosed over the age of 50) are put into until it becomes more clear over the passage of time what direction the disease is taking.

It was in July last year, about the time of my 60^th birthday that I could feel things changing a little for me.  Not much – just a bit more fatigued and off balance, stiffer in the hips, weaker in the legs and I found myself taking a few more painkillers at night-time, but the thing that prompted me to investigate further was that there was something wrong with my eyes.  At first I thought it was both eyes and probably just normal deterioration of my short-sightedness, but it occurred intermittently and I started to suspect that MS was playing a hand in this.

I went to my doctor in July who sent through a referral to a neurologist while I was in his surgery.  I was eventually given an appointment in late November.  I expect the delay may have been due to a backlog of patients after our Covid restrictions.  I wasn’t particularly concerned about this.  Thankfully MS isn’t like cancer where you need to act speedily or face the potentially fatal consequences of delayed action.

I was sent for a comprehensive MRI which was booked and performed in just over a week after my neurologist’s appointment.  Two weeks after this I had an appointment at the hospital for a VEP test.  A Visual Evoked Potentials test measures the electrical activity of the brain in response to sight stimulus. These tests can detect the speed of the impulse that passes through the nerves and are sensitive enough to detect lesions even before they show up on neurological exams.

The MRI was performed without incident, however when I showed up at the hospital for the VEP test, after having got my daughter to drop me off as there is very little parking at Christchurch hospital even for those with a mobility tag, I was eventually told after waiting for half an hour, that the appointment had been cancelled by my neurologist.  My daughter drove me to my car and as I drove the 30km back to my home I wondered what on earth might have prompted him to do this?  No explanation had been given.  Had he found something on the MRI? I morbidly wondered whether this could be a brain tumour.  I tried phoning his rooms but since I wasn’t a private patient, I had to phone the public hospital to get an answer.  This wasn’t easy but I was eventually put onto someone who said that yes, he had found something on the MRI and that an appointment had been made for me to see him in the new year and no, she couldn’t tell me what he had found.  I phoned my GP but they hadn’t received the MRI report from the hospital.  It was now only days until Christmas and I really wanted some answers but it seemed that the only place I could turn to for advice was Doctor Google. 

Doctor Google normally scares the shit out of me but when I entered MRI EYESIGHT DIAGNOSIS MS, a string of results came up confirming that this must be Optic Neuritis which is common amongst people with MS.  Not exactly comforting but preferable to the brain tumour I had invented and something I felt I could deal with.  But surely it’s not really acceptable that a patient has to turn to Google to get information when they’re in a situation like this?

I had my appointment with the neurologist yesterday and the MRI results have shown signs of active disease and amongst other things a small demyelinating lesion was found in my left eye which must be what’s causing my eye troubles.  Although this isn’t necessarily good news, I found out yesterday that these confirmed signs of active disease on the MRI have put me in a position where I qualify for Pharmac funding for disease modifying treatments such as Ocrelizumab.  I didn’t qualify for any drug treatments at all whilst I was categorised as having Primary Progressive MS as it’s not considered (by Pharmac at least) to be effective against this type of MS, although a Google search would dispute this.

Evidently Pharmac have recently relaxed their rules regarding the amount of paperwork and somewhat draconian procedures involved in securing these drugs but this doesn’t come into effect until March 2021 so I’m having to go through the form filling process and will no doubt have to do the “walk of shame”.  This is the test that proves that someone with MS can walk 100m with or without rest and/or assistance (including a cane, crutch or brace).  The really sad thing is that people who can’t do this are denied the drug because they are considered to be too far gone for the drugs to be effective which must cause an enormous amount of stress and anguish.  This won’t be a problem for me but my heart bleeds for people who fail this test – particularly those who may have benefited from the drug and suddenly find they can’t access it anymore. 

So that’s where I’m currently at.  I think this will be an interesting journey and I’ll report back soon.