I will shortly be starting my next booster dose but I thought, since I don't really notice any difference between when I am taking the antibiotics and when I am not, I might as well post now. Sorry if it is a bit long, but I am just getting things sorted out in my mind about how come it took so long or me to realise what was wrong with me. If the truth be told, I am almost glad, because what could have been done twenty years ago, a year out of college and with my whole life ahead? At least I didn't have to spend all that time worrying about it, and I am pretty good at worrying.
In my first posting, pages back, I said that I must have had the disease for about fifteen years. In actual fact it must have been longer, because the first symptom I went to a GP about was when I was 25, so now over twenty years. This was something I had forgotten about completely until I saw my old notes from back when everything was written down on pieces of card and clipped together. I went because my left thigh had been numb all down the outer edge and my then GP had even drawn a detailed two colour picture of said thigh, showing where I felt the numbness. It went away, as he said it probably would, after a couple of weeks. My next symptom, a then temporary uselessness of my right hand and arm was several years later, lasting about a month. I had moved by then and this GP was someone brought back from retirement as a locum tenens while my normal doc was on pregnancy leave. He didn't ask me about anything else, but just said it was probably due to a trapped nerve in my shoulder, so come back in a month if it wasn't right and he would organise some physiotherapy! A month - what was I supposed to do for that month before even starting treatment, I thought, so I found an osteopath. A month later of course it was totally better, so I didn't even bother going back to that delightful man. This happened again, and I, thinking he must have at least been right about the trapped nerve, went to a man who was a physio for a local football team, and again, better in three weeks. I must admit that it did cross my mind at some point, that I had MS but I just didn't want to entertain the idea, so when I was totally well for most of the time, I could easily put it out of my mind. Even the CRABS weren't available then, so what else could I do? Several years on again, I met David. I had not had anything go wrong in the intervening period that I can think of. I remember that we both went on a walk which involved a couple of miles of lumpy, stony beach where I found myself tripping a bit on the stones, which was unusual for me, but I put it down to the miserable, windy, rainy Lancashire weather. We then reached the salt-flats, which was fine. Then up and down a few hills, no trouble, so put that out of my mind again. I did nearly get blown away on the top of Warton Crag, but it was jolly windy and I am not a heavyweight.
There followed after this a few patches clumsiness: falling off kerbstones and such like, but I always put it down to being a silly thing to do, to walk right on the edge of the kerb anyway. I was not affected at all at this stage with how far I could walk or cycle or anything. Put me on a bike and I would just keep going all day and not feel any more tired than the next person. David had been a caver before he met me and I kept on saying that we should go, but he kept making excuses. As it happened this was because he was worried that there was something wrong with me: I seemed too clumsy in certain things for someone who didn't look clumsy at all.
Then in 1999 I had just got over a bout of 'flu, when I had to do jury service which ended up as a three month stint. I was living in Bedford by then and the crown court was in Luton. I had no trouble walking the couple of miles to the railway station in the morning, in about 20mins, but the trouble came when I had to come home. There were four of us from Bedford and we often ended up running for the train to come home, but could I do that? I just couldn't make my legs move fast enough. I also had developed adult onset asthma, which needed an inhaler to stop me coughing all through the interminable list of witnesses. I had actually coughed for years in a more minor way, but not any more. By the end of the year I was really having difficulties: on a walking holiday in the Auvergne and the Causse Noire, David was leaving me trailing way behind. I could manage to scrape up somewhere eventually but coming down was anther matter. Those steep, narrow, twisty paths which formerly would have worried me not at all suddenly petrified me. You don’t realise how far you have managed to climb until you get to the top and look back. I told myself not to be so silly, I was behaving like my mother, but once David was far enough ahead I would often resort to coming down certain parts on my backside. A few months later I had developed severe foot drop on my right side, so David persuaded me to see someone. My GP sent me to an orthopaedic surgeon. Result: ‘obviously congenital spinal stenosis, a perfect example.’ This suited me because he also told me that there was a 30 percent chance of getting completely better. Being an optimist, I was bound to be in that 30 percent and ignored what I later found out about it being most common with achondroplastic dwarfs! Well, ‘most common with’ doesn’t mean ‘only seen in’, after all. David was accepting of it because he didn’t know at the time anything about CPn being implicated in MS. His last experience of people with the disease dated from his student days and later on when studying neuropathology at Oxford. These were really severely affected people, of all ages. The youngest was only 26, completely paralysed and fed by a tube into the stomach. So obviously he didn’t want to think, after only a few years of marriage, that it might be that. He had only seen MS from the worst viewpoint and I was about to reach there without even knowing I had already gone down the nursery slopes. This doesn’t happen to everyone by any means but my particular MS suddenly became very aggressive, probably because of one reinfection too many. It really began with full force in the summer of 2001, when I came out of the central post office and realised that I couldn’t walk home: a distance of less than a mile. I wasn’t thinking at all clearly because I thought that I should phone home and get David to bring my bicycle down so that I could cycle back on it! Obviously I couldn’t but I did manage to stiltingly walk back using it as a kind of frame. I got somewhat better from that, but then started an inexorable progression downhill, until two years ago, after insisting that ‘it’s alright, I’m getting better’, just once too much, I agreed to see a neurologist, had an MRI scan, and the rest is all documented here already.
At the end the disease was progressing so rapidly that I really should have admitted defeat and thought seriously about wheelchairs and suchlike. Not that I would have been able to use a manual one myself, with only the use of one arm. But here David, jolted out of his fear and dread, set to work, firstly recalling that in about 1880, when the French neurologist Charcot first accurately described the disease, he also posited the opinion that it seemed to him like an infective disease. He then looked a bit further and found the work that Sriram and Stratton were doing at Vanderbilt, did a bit of research in his laboratory and brought me back the doxycycline……………………………………
Well, this might be a bit longwinded but it makes a change from my normal 'this, that and the other' finished off by my latest little cork catching trick or whatever.
When people with secondary progressive disease were first trialled for Campath, they showed some improvement at first but before two years were up they all started progressing once more. My two years are nearly up, but I am still showing improvements and no sign of progression. And my finishing party trick? Well, I can now put both hands fully above my head and keep them there. The right still not quite as fluid as the left, but two years ago it was absolutely useless.