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MS: a patient perspective

by Tony Watters

Tony WattersI feel very grateful that I had 35 years of life without MS.

On 18 January 1988, my life was to change - I woke-up totally blind in my left eye, thinking 1. Was I going mad? And, 2. Having experienced extreme long-sightedness for all of my life - helped by the wearing of spectacles and now, contact lens. I wondered what the ---- was going on? That same day, I visited an optician and the hospital’s A&E Department in Redditch – with no answers, other than “It might be an age-related retinal problem?” Giving me a huge patch covering the left eye, which left me feeling like an out-of-work-pirate! And it was obvious too – even to a lay individual that it was serving no useful purpose whatsoever. My wife, who was a medical secretary to a Consultant Ophthalmologist in Cornwall many years prior to this event, rang him with regard to my problem and we visited in May. He held the ophthalmoscope to my left eye, and within 30 seconds he stated “You’ve retro-bulbar neuritis Tony, normally a manifestation of multiple sclerosis!”

My wife and I returned home totally devastated, we’d heard those two words before in the context of our hospital work experience, however not the precise nature of the “beast” (my affectionate term for MS). We did not impart the true purpose, reason, or outcome of the Cornwall visit to our families – other than “We needed a long weekend break!” I returned to work and told my superiors of the diagnosis, they were very sympathetic and supportive. I was in the middle of implementing Patient Admin, Pharmacy and Radiological Systems to four RAF Hospitals here in the UK and Germany. I continued - as I did not want to be beaten by the “beast” (the unknown quantity!).

I then made my first appointment as a new patient at the surgery in Studley, I walked into the GP's consulting room and he asked, “A new patient! What can I do for you Mr Watters?” I replied “I’ve got retro-bulbar neuritis – a manifestation of MS!” I’m glad the doctor was sitting in his chair, as he would have fallen otherwise, stating “I do not get many people diagnosing themselves with MS Mr Watters! What makes you think that you have?” I then of course explained the chain of events that had taken place - including the provisional diagnosis made by the ophthalmologist, he seemed reasonably satisfied and proceeded to refer me a neurologist in Birmingham.

Part of that referral process was to undergo a “Lumbar Puncture” (in the USA known as a “Spinal Tap” – a much more appropriate term!). I remember lying in the foetal position for 43 minutes (a town clock in Birmingham’s city centre could be seen from the ward's window) whilst two junior Doctors attempted to get a needle into my spine. I commented: “It’s not a very good position for flatulence is it?” They moved away from me at the speed of light! I was joking of course! They did not complete the task, as “My disc spacing was very narrow!”. I was then referred to the hospital’s Consultant Radiologist who successfully completed the task within a few short and painless minutes. I am not gay, but I wanted to kiss him because of the swift, efficient and professional manner with which the procedure was successfully carried out.

The following weeks seem to take an age, and eventually (now October 1988) an appointment arrived from the Queen’s Medical Centre, Birmingham to see the Professor of Neurological Sciences. The day finally came when my wife and I got to the outpatient department and were shown into the consulting room. The clinician stated that the result of the lumbar puncture had shown abnormal cells that confirmed a diagnosis of MS – no surprises there! He went on to say that research into the MS disease process was very positive, and a that cure was within reach – “Probably six years”. This I found difficult to swallow as I’d done a great deal of reading, and nowhere had it stated such a fact, not even remotely so. I did not enter into a dialogue regarding the impact of the now proven diagnosis, it was still a lot to absorb and digest fully – if one ever does?

The next three years (1988-1991) now seem to drift into a continual learning process regarding the disease, although on a positive note the sight of my left eye gradually returned. The “Beast” had now become the “Ghost”, as one did not know when it would strike (exacerbation), where it would strike, the duration of strike, with what intensity and what it would leave you with, or without after the strike? It was treated in the early stages by adreno-corticotrophic hormone (ACTH), a course of twenty-eight subcutaneous injections. Seven days at 80mg reducing to seven at 20mg, I used to joke with the surgery nursing staff that they’d recognise me more from my buttocks than my face, my bottom felt more like a dart board at the end of a course! (The side effects of ACTH for me were nocturnal unrest and “blowing-up” of my face with some weight gain). I was getting three to four relapses a year at this stage, each one leaving me weaker in physical terms, especially legs, bowels and bladder.

In early 1991 an opportunity arose to return to the West Country based at Derriford Hospital’s Computer Department. I thought it would be better in “Quality of Life” terms with support for my wife and children as we’d be nearer family and friends. MS has as much - if not more of an impact on those that care, as with the disease process itself. At this time a new treatment was available for the remitting/relapsing form of MS known as Methyl-Prednisolone, for me it was far more efficient than ACTH, and the treatment lasted for three days only - via iv (drip). Again the medical staff always had a problem with venflon insertion into a vein; it was a return to the “dart board” scenario, leaving me branded by the medics as a “Needle Phobic!” (Just a coward really!)

Methyl-pred’ seemed to have more of a beneficial, positive and immediate effect too, getting me “back-on-my-feet” backed-up with physiotherapy. From 1991 to 1999 the remitting/relapsing cycle continued, the only exception being an onset of a horrendous pain, the like of which I’d never experienced before which was diagnosed as Trigeminal Neuralgia (1994/5). It really made one want to “end it all”, I was treated initially by anti-spasmodic medication, but this had no impact whatsoever. One could not eat solids, yawn, or laugh - as sometimes even a smile would initiate a substantial acute pain in the jaw region, it made a toothache seem bearable. Eventually, I was admitted as an emergency and seen by the “Pain Clinic” clinician at Derriford - who gave me a nerve block, leaving me with a “zero sensation” in the area of pain, it was a totally 100% successful treatment. To say that it had given me pain relief and a return to a reasonable quality of life again is a gross understatement, I’ve had two further “blocks” as the treatment(s) are not permanent.

I retired in 1995 as the “fatigue factor” of MS was increasing. When one had left the workplace it was early-to-bed during the week and my time to enjoy at home with my wife and family was slowly, but surely being eroded. Initially, I thought I was being negative and “giving-in” to the MS, however I have no regrets, as it has given me time to maintain a reasonable quality of life to exercise and combat the muscle wasting that has taken place. Other aspects of MS, which are extremely frustrating, are urination and defaecation control (lack of), in that they set one’s agenda and timetable. I cannot, or dare not go on a long distance journey unless I have “been to the loo” or that I know I will have fairly immediate access to such a facility. Medication and/or appropriate appliances are available. I am currently researching and taking advice on this subject.

I was formally diagnosed as being in the “secondary progressive” phase of the disease process last year and obviously wish it had not progressed however, it does seem to have reached a plateau and is more consistent, although one is always prepared for the superimposed exacerbation!

Finally, I have access to current research and medications that are available to those of us with MS. I think the future looks positive with treatments such as beta-interferon, and hope we will not have to face the “Postcode Prescribing” issues that take place. Before retiring in 1995, I was a “Health Information Analyst”, and evaluation of MS inpatient activity (1994-1995), the cost for Plymouth Hospital’s Trust was over half-a-million pounds per annum (Based on SWRHA’s 1994/5 Occupied Neuro’ bed day costing of £1.104). This excludes primary care costs and those professions supplementary to medicine. Surely treatments like beta-interferon are not only clinically effective but cost-effective too!

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