MGA News July 1999

I wonder how many of us, particularly those of us who have a more severe level of MG, tend to blame all our ills on the condition. It can be dangerous, as Mrs Gravis reminds me from time to time, having MG does not make you immune to other problems. I am only too well aware just how devastating the effects of our condition can be, I keep hoping that things are better, regularly overstep the mark and suffer for it. This is, of course, accompanied by gentle reminders from Mrs Gravis, that she might just, only in passing you understand, have warned me. I comfort myself with the thought that I might well have been weaker for a few days, but that no one could take back what I have done whilst getting into such a state. But, as I say, not everything is down to myasthenia, we do suffer from other problems.

For a year or two I had been experiencing a sudden loss of grip in my right hand and tingling in both feet and hands, My right knee would also give way without warning. I put this down to muscle weakness, bad posture, sitting awkwardly and even just old age. It seemed better for a while after a visit to the chiropractor, who did mention trapped nerves. Eventually I told my GP who checked me over and said he could see no cause for immediate concern and thought it might be spondylosis, which sounded like the name of a Greek island to me. I was instructed to tell the neurologist when I next went to his clinic. I, obedient as ever, did this and was reassured that there were no major problems on the MG front.

Some months later I had a fall and suffered two cracked ribs. This was one time when I had overreached myself and I had to allow Mrs Gravis an "I did warn you". It being the more annoying that she had. As a result I was referred to the osteoporosis clinic to make sure that the prednisolone which I take was not causing calcium to leach out of my bones. In passing I mentioned the spondylosis to the consultant who immediately said, "Oh yes, no problem your GP is quite right, ever had a neck injury?". I told him that in the early seventies I had suffered whiplash injury in a car accident, but had been assured that there was no lasting damage. "Well there was" he said, "as a result of whiplash the vertebrae in your neck are probably wearing more than is normal, they are slack and move out of alignment trapping some nerves."

X-rays confirmed this and I was issued with a neck collar to support my neck when sleeping and some physiotherapy was arranged. I wonÕt repeat what Mrs Gravis says I look like, but I must admit that together with my CPAP unit (Life with Gravis summer 1998) I probably look quite a sight. What my nephew will make of it when he comes to stay this year I hate to think . Without the CPAP probably "Hello Vicar" and with it the Revd Jumbo.

I expect it's the same everywhere, but in our neck (no pun intended) of the woods physios are harder to get to see than most consultants, our local waiting list is about four months. Mrs Gravis says that I am cynical, but I am sure someone in the appointments office slipped up, because when I finally got an appointment not only was she brilliant, but she specialised in neuro patients and knew about MG. The consultant had directed that there should be no rough stuff and so the physio set about teaching me to sit properly and to do gentle exercises which, without tiring me, would strengthen my neck muscles and straighten my neck and spine. These are done lying on my back, with a towel under my spine and 4 inches of books under my head. They consist of gentle head movements, with periods of rest in between.

Mrs Gravis, sympathetic as ever says. "Just like you, if you have a chronic condition it has to be MG, which no one has heard of and then your exercises consist of having a good lie down." The thing is they work. I still experience a sudden loss of grip and I often stumble when my right knee gives way, but not so often and I have lost the tingling in my hands and feet. If I, or my GP, had just put it down to MG, I would have probably become more and more unsteady, instead I am at least maintaining a reasonable level of mobility given my condition. So I am trying to learn to discriminate between what is normal for a myasthenic and what needs attention and you can be sure that Mrs Gravis continues to curb my worst excesses.

MGA NEWS July 1999

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