It was almost 4 years since I had had a BUPA health check up. As I was rising 74 I decided it was time I had another one. I wasn’t too concerned as I was in pretty good shape I had been going to the gymnasium for the past two years, three times a week, for one and a half hour sessions and as a result (or, at least so I thought) had got myself down to a trim 10 Â½ stone.
My consultation was with a young female doctor – who was very charming but who is not as thorough as I would have liked. The problem was, that although I booked the consultation some two or three weeks earlier none, of the necessary appointment papers had arrived (this despite three separate telephone calls requesting the papers) and when it came to the consultation the doctor had to spend some considerable time completing the questionnaire which I had been unable to finish myself between the various tests. As a result, she did not carry out a muscular and skeletal examination. Had she done so she would have noticed severe muscle atrophy as well the fasciculations (under surface muscle twitching) which should have alerted any knowledgeable doctor to the possibility of a neurological problem.. However, her conclusion, from this particular health check-up was that I was in pretty good shape. A BMI and body fat, both of 21, an excellent waist to height ratio, good blood pressure and a better than ideal chance of not having a heart attack for someone of my age.
During the consultation I mentioned two particular concerns. One was a burning pain in my groin, on the site of the scar tissue from my artificial urinary sphincter operation. I told the doctor that the burning pain usually arose after I had been exercising (playing golf, for example) for a couple of hours. This she put down to a hernia and referred me to a general surgeon.
This evening I had a consultation with a general surgeon who concluded that I did not have a hernia.
The second problem, I had mentioned to the doctor was a slight weakness in my left arm. Again, I pointed out that this weakness only seemed to come on after some period of exercise. She tested my muscle strength and decided to refer me to a rheumatologist. I questioned this at the time and respectfully asked if I should not be seeing a neurologist as I suspected the problem may have emanated from a nerve in my neck ( from the 4/5 cervical fusion I had had some years earlier after being struck in the back of the neck in a polo match, smashing four vertebrae) but she was adamant that the rheumatologist was the correct consultant I should see. The Dr. was not particularly concerned about this problem and as I was about to go to Australia I almost left further investigations until I returned at the end of March. However I did then follow it up and saw the rheumatologist today.
He carried out a blood test and immediately referred me to the London Bridge Hospital for a nerve conduction test.
The EMD and nerve conduction tests were very unpleasant. It was nasty electric shocks and needles stuck deep into my muscles. I told the good Dr. that he was worse than visiting the dentist!. This nerve conduction test confirmed that I was suffering from a serious neurological problem. As a result I was referred to a neurologist who took some blood testing.
Then, with only days to go before I left for Australia, the neurologist took more blood, for 9 different tests and booked me in for another series of other tests.
Today I had brain scan and an MRI of my entire spine, this meant lying prone in the MRI machine for almost 2 hours -not very relaxing. I was then sent off to the London Bridge Hospital for a lumbar puncture. This was the worst test of all was the Dr. had four or five attempts at pushing the needle through my spine in order to extract some spinal fluid. Resting after that was necessary for two to three hours but this did not stop me suffering a severe headache which kept me in hospital overnight. Even after two sleeping pills and a diazepam I only managed one hour 40 minutes sleep. Fortunately there was a good television in the room so I was able to keep myself amused during the night.
No breakfast and gallons of water later I was sent for an abdominal ultrasound scan and some liver tests. Following the test I understood from the radiologist that there did not appear to be anything abnormal, at least not with the liver.
Between the early-morning tests and the evening consultation with the neurologist I went out and had a cracking lunch of lobster and champagne, at Sheekeyâ€™s, one of my favourite restaurants, with my dear old friend Geoffrey Hanscomb. That put me in the right frame of mind to hear the worst, whilst still hoping for the best.
That evening, â€˜my lovelyâ€™ (Alice, my wife) met me at the CafÃ© Rouge for a little more champagne and a light snack before our meeting with the neurologist for the moment of truth. I had previously told him that whatever he had to say, provided I had more than a month to live I intended to go to Australia whatever. I was, of course, putting on a great show of bravado whilst at the same time feeling very apprehensive.
In the event, the Dr. confirmed, what I had feared all along, that all the indications were that I was suffering from some form of Motor Neurone disease (MND) or something allied to it.
This is what I had suspected, having looked up the symptoms on the Internet. I read that MND refers to a group of diseases which affect the motor neurones which are the cells that control voluntary muscle activity such as speaking, walking, breathing and swallowing. The prognosis, in any event, was not good. There are broadly four various types of MND.
Most cases of MND progress quite quickly with noticeable decline over the course of months. Symptoms may present in one region and they will typically spread. MND, it said, is typically fatal within 2-5 years, with around 50% of patients dying within 14 months of diagnosis. One in five patients may survive for five years and one in 10 for 10 years. Â Mortality normally results when control of the diaphragm is impaired and the ability to breath is lost.
The worst of the four forms of MND being ASL – that is when MND is the presence of both upper and lower motor neurones.
The other three are primary natural sclerosis (PLS) ; progressive muscular atrophy (PMA) and bulbar -pseudobulbar palsy – spastic and progressive bulbar palsy -spastic and flaccid, appear to be less serious inasmuch as one might live a little longer. No treatment is currently effective for any of these conditions. Although the use of a drug (Riluzule) , in the case of ALS, can extend the lifespan of a patient by 2-3 months. None of which is, what you might call, terribly encouraging.
Nor was the consultation with the neurologist very encouraging. Although he was unable to definitively confirm the precise form of MND from which I was suffering he was encouraged by the fact that it did not, so far in any rate, seem to be affecting my throat and he therefore suspected that I was suffering from one of the lesser forms. In other words, I wasn’t going to die tomorrow and it may well be years rather than months. At this point he was awaiting the outcome of some of the blood tests which apparently take three weeks for culture the to grow, but he did say that he would be surprised if any of them showed anything significantly different from his initial diagnosis. He did however, want me to see yet another neurologist, one of world leading authorities on MND, Professor Nigel Leigh at Kings College Hospital, for a second opinion.
Funnily enough having received the neurologist’s diagnosis I felt more optimistic, at least I had some idea what was wrong with me and possibly what is going to happen to me but, at this stage, I don’t know when. In the meantime I have been put onto Riluzole for 56 days to see what effect, if any, they have on my liver function.
My day did not start on a high note when I received a telephone call from BUPA saying that as I had been diagnosed with a chronic terminal condition I was no longer covered by my medical insurance. That in itself was something of a shock. The explanation they gave was that they could not afford to cover chronic conditions but only things that could be treated. As there was no treatment or cure for MND, that was that. However, as they accepted that I had had a less than satisfactory BUPA check up they agreed that they would cover me for consultations and treatment for the first three months, after that I would be thrown onto the NHS.
This at least meant they were prepared to cover the cost of the first fortnight’s tablets at Â£363.
I telephoned Professor Nigel Leigh and he kindly agreed to see me in early April on my return from Australia.
Now I could concentrate on thinking about my Australian trip starting next Thursday.
Smiler, Kimberley (Son and daughter-in-law), Chloe, Karl (daughter and son-in-law) and the grand children all came down today for lunch which cheered me up no end.
The Volzâ€™s left after tea but the newlyweds stayed for supper. It was lovely to see them all before I headed off down under.
A beautiful spring day, I played golf in the annual geriatric match over 65â€™s against the under 65â€™s. We had a usual problem of finding enough members to play in the under 65â€™s team.
Unfortunately I was unable to continue past the 15th hole. I had the most excruciatingly burning pain in my groin, in the same place as before, under the scar tissue from the artificial urinary sphincter operation. I’d had mild burning attacks before but this was unbelievable. What was rather distressing was that I had been signed off by a general surgeon, barely a week ago, who inspected this site and dismissed the idea of a hernia, followed by the neurologist who also examined me and found nothing untoward. This was followed by the radiologist who carried out the ultrasound who also said he could find nothing amiss. This made the whole thing more of a mystery and not a little worrying as I had no intention of delaying my departure to Australia.
I telephoned my old urologist who had carried out my radical prostatectomy, in 2000. It seems that he had come across this problem before – something to do with a trapped nerve end – and he kindly prescribed some pills over the telephone. I shall take them with me to Australia and pray that they work. In any event, there is always my host surgeon Michael, if there’s any cutting to be done!