In the previous section the symptoms of MS were outlined. For some of those individual symptoms there are medications and treatment available. For general MS there are some treatments (steroids and other medications) that can reduce the severity of attacks or reduce further damage in the future. There’s nothing to treat the damage that has already occurred. Things like physiotherapy, occupational therapy or speech therapy can assist.
The symptoms I had been experiencing for a couple of years (e.g. weakness in the limbs, trouble walking etc) could have been symptomatic of many things, like a bad back, not enough exercise or just getting older. For some time I had regular chiropractic treatment and, because I have had a crook back for about 35 years thanks to a car accident, I did get some relief. With hindsight it masked the problem – or, to be honest, I was probably denying there was something more sinister lurking.
Luckily I found a good GP – one with a dry sense of humour and no penchant for ‘lecturing’ as he enjoys a couple of vices that other doctors frown upon. Dr Jim also has a sister with MS and he did some routine reflex tests (plus blood, ECG, lungs and CT scans, all of which showed nothing). His thoughts following those reflex tests were that I either had MS, which would only be confirmed by having an MRI – or I had alcohol-induced peripheral neuropathy, caused by drinking too much wine on regular occasions. The latter could only be determined by giving up drinking for 8 to 12 months. Jim figured that if we tried that and I still had the symptoms it would have been 8 to 12 months of no fun before we had to head down the MS path. So best to rule out/in MS first. Jim referred me to a neurologist, both because the MRI scans would then be free rather than in excess of $1000 and also because he didn’t feel ‘qualified’. He said that when lecturers want to fail medical students they roll out the neurological questions – it’s a fairly complicated science. So, a neurologist was sought and found (Dr Noel) and he turned out to be a win as well. He’s realistic, open and easy to get along with – and a leader in his field.
Noel did more reflex tests and decided on the MRIs of the brain and spinal column, asking me if I was claustrophobic. His receptionist, Barbara, asked me that as well. So did the person next to me in the waiting room at the X-ray place. As did the form I had to fill out, the radiology receptionist, the nurse and the radiologist. I replied that I didn’t know, but I sure as hell had a fear of claustrophobia! They even give you a panic button to hold so you can stop the scan any time you start freaking out. Anyway, turns out that I’m not claustrophobic – and it’s not a painful experience. It is very noisy and you have to lie still – and, inevitably when you have to lie perfectly still, you will find that your nose will itch and ask you for an impossible scratch.
The MRIs were completed and the films collected with the envelope flap secured by a large sticker stating boldly, “CONFIDENTIAL X-RAY REPORT ENCLOSED. ONLY TO BE OPENED BY DOCTOR”. As soon as I opened the envelope I discovered why – it’s in doctor language and is harder to read than most doctor’s handwriting – words like ‘sagital’, ‘cervico-medullary’ and ‘osteophyte’. I found out that my mastoid air cells are unremarkable (is that a good or bad thing?), as are my corpus callosum, orbits and paranasal sinuses. There’s no bony spinal canal stenosis and the cerebral hemispheres, cerebellum and brain stem are normal. And so on. Annie read the report and said, “That’s good news.” I replied, “What, that I have MS?” You see, I’d already been Googling after reading this bit, “There are patchy hyperintense lesions of the cervical cord with slight C4/5 level cord atrophy. The appearance is suggestive of demyelination.” If you Google ‘demyelination’ it will take you to MS.
So, armed with this knowledge and feeling like a naughty schoolboy for opening the envelope I sat across the desk from Dr Noel and said, “So we have MS to deal with.” “Not necessarily,” he replied. “It would be wrong to start treating MS if it isn’t MS.” “What else could it be?” I asked. He declined to answer, probably because cancer of the spine was one of the options. He then dropped those two little words that everyone loves to hear – “lumbar puncture” (also known as a “Spinal Tap” which, incidentally, is one of the funniest movies ever made). Well! Did others have an opinion on what discomfort I would be in for on that front?! Apparently a claustrophobic MRI would be a walk in the park compared to what I was about to cop!
Lumbar punctures have changed a lot over the years. Once they came with a combination of contortion and excruciating pain with a nervous recovery period. After all, they are inserting a large needle into your back, finding a sac on the spinal column and draining out spinal fluid. When it comes to bodily fluids, these are pretty essential ones. These days you lie flat, face down and perfectly still (which inevitably results in an itchy nose). The most painful bit is the local anaesthetic. Following the procedure you have several hours keeping still in a bed, drinking copious amounts of water to prevent headache. Apparently when the brain senses that some of the vital spinal fluids have been stolen it can react with a very nasty headache. The only reaction I had was to the two litres of water. The bladder asked me for a bit of relief. I passed this request on to the nurse who said she would wheel in a commode. I declined that offer and told the bladder to hang on for a while. It replied that it would rather not. I waited until the nurse was out of sight and gingerly wandered the corridors until I found a WC. The bladder thanked me and I was quietly chuffed at my independence. The nurse was far from happy though and wasn’t afraid to tell me. Apparently men are far and away the worst patients! Anyway, no damage was done, no headaches eventuated and when the tests came through they confirmed that I had MS. I guess a lot of people wouldn’t like to hear they have MS but for me it was somewhat of a relief. At least I knew what it was and could move on from there.
Noel prescribed weekly self-injections of Avonex and I was assigned a nurse who only looks after people diagnosed with MS (I have privately nicknamed her ‘Nursie’ Mel – the ‘Nursie’ coming from a Jethro Tull song). Mel turned up at home and gave me a crash course in MS and how/why to stick a needle in my thigh once a week – and she’s been there on the phone or email supporting ever since. As the Tull song goes, “Nursie dear, I’m glad you’re here, to brush away my pain…” Not that I have much ‘pain’ as such, but I’m certainly glad she’s here!
The weird thing with injecting the Avonex is that it does absolutely nothing to improve your situation. But, as Dr Jim said, you don’t want to cut the wiring, and Avonex is about stemming the progression of MS. And it is probably an important part of finding a cure for the disease. But at least diabetics who inject know that without those injections they would die. That’s healthy motivation to stick a needle in yourself. So too, I imagine, is the reward junkies get from shooting up heroin. There’s certainly no ‘high’ with this ritual. And Avonex injections can come with side effects, the main one being a day or two of cold/flu like symptoms – so Panadol and Neurophen go hand in hand with the injection. Before Mel’s briefing, I didn’t know you could take them in tandem. For the first few weeks I took both with a two hour gap between (so each stayed within the recommended four hours between pills). After 6 to 8 weeks I started weaning off the pills as the body seemed to be accepting the Avonex.
Incidentally, I mentioned two ‘brand’ names a few sentences ago. There are generic brands like Panamax and Raefen that do exactly the same job at a fraction of the cost. I guess the ‘brands’ have to charge more to cover the cost of advertising, some of which borders on misleading. Don’t tell me a tablet can tell the difference between a headache, period pain or back pain when every packet claiming to target those specific areas contains the same little pill of 500mg paracetamol!
As for the actual injections, they are okay – the couple of minutes anticipation prior to pushing the plunger are far worse than the actual injection. The nifty injector ‘pen’ does most the work for you. It is an intra-muscular injection that I put into the thigh (alternating each week). I have only had one ‘bad’ injection. I sat on the bed and, forgetting Mel’s instructions of having feet on the floor and leaning forward slightly, I had my feet off the floor and was leaning back slightly. Mel tells me you only make this mistake once. Or twice if you are really thick. Logically, needles don’t find it as easy going into a taut muscle as a relaxed one.
I know there would be people who have a fear of needles that would find self-injecting a hard task and, in those cases they would need to call on a spouse, family member, really (really!) close friend or visit a medical professional. I’m quite pleased I don’t have a fear of needles or claustrophobia.
For the trivia buffs, an acute fear of medical procedures involving needles is ‘trypanophobia’ and apparently at least 10% of Americans suffer from it. Sonny Liston, Snoop Dog and Jackie Chan are three famous people to have this phobia. It is also one of the many phobias on the list for the fictitious character, Monk.
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