Testing time

I was quite excited at the idea of being a day patient at the National Hospital for Neurology and Neurosurgery at Queens square in central London because I was to be accommodated in a hotel each night paid for by the hospital.  I would not know which hotel it was going to be until I was registered.  I also arranged to have dinner on three nights with friends to avoid sitting in my hotel bedroom on my own.  So allowing myself enough time to get dressed (as it is a slow business now), I got the early direct train from Skipton to London and then a short taxi ride to Queens square where I checked in at the day patient centre.  I was taken to a small room (one of several) with five tall backed arm chairs numbered consecutively mine was number 5.  This was going to be my home for the next five days.  There were other patients in the room.  Some of them very familiar with the routine so could explain things to the newcomers like me.  Many of the patients, quite young were suffering from MS and having infusions.  The young man next to me, suffered from terrible headaches, almost continuously he said, and had an operation to put an implant into his brain.  He had come back to have his implant readjusted.  I already felt better!

I was introduced to the nurse that was responsible for the room I was in.  She took my blood pressure, weight, and measured me checking  I was who I was by asking me repeatedly for my date of birth and finally telling me that somebody from Prof Lees team would see me that day.  So, I got my book out and settled for a long waiting game - the NHS is never in a hurry - as I watched my nurse join the others at the desk chatting and shuffling a few papers around.  I have come to the conclusion that as a patient your time is inconsequential and fully at the disposal of the administration. About half an hour later she gave me two small green post-its, one with the name of the hotel I was going to stay in and the other a list of the tests I was going to have over the next few days.  It did not include an autonomic nervous system test which would have to be arranged separately. There was no timetable for these tests.  I was in for a noisy claustrophobic MRI scan; I had already done one at Airedale hospital which obviously wasn't good enough for the London team because they have bigger and more sophisticated machines, a 3T scanner I believed.  The levadopa challenge sounded interesting but the 2 hour psychology examination to establish whether I was sane or not didn't.  Two questions, stick in my mind; how many zebras are there in the Netherlands and how heavy is a pint bottle of milk?  I was reassured after bursting out laughing that these were serious scientifically cleared questions!  I never did understand psychology.  So the day, dragged on broken up with an intermittent checking on my blood pressure and temperature.  Lunch came and went a tuna mayonnaise on white bread sandwich with a banana.  Eventually a doctor appeared and took me off to the consulting room, where he introduced himself as one of Prof Lees team and we went through the usual questions and tests such as being pushed backwards and my blood pressure being taken when lying down and then standing up.  This always gets the doctors excited, as my blood pressure drops dramatically and I should faint but don't.  He said that I would see the Prof the following afternoon.  So that was it for the day, so I left to find my hotel, which was close by and rather nice.

Over the following days will be  I completed an eye test, sleep test, urology and, physiotherapy consultations as well as the brain scan, the levadopa challenge, and the neuropsychology examination.  What the tests amongst other things were trying to do is to decide whether I was Parkinsons/P Parkinsons/A or Parkinsons/C or just Parkinsons!  If you fall into one of these categories, P,A or C it is MSA with dominant (P) parkinsons (movement) symptoms or (A) autonomic nervous system problems(blood pressure and swallowing) or (C) Cortico basal degeneration.  It can be a combination of all three but usually one category is dominant.  I might have got this completely wrong.

Rather worryingly, the sleep test is to determine whether I stop breathing when I am asleep because this happens with MSA.  I was relieved to hear that I do not.  Little by little the doctors were edging towards a conclusion and diagnosis at last.  Later, I was told by Prof Lees that they could not be certain about my diagnosis until I was dead and could open up my brain! 

It was frustrating having to repeat my story so many times to so many doctors I suspect to save them time reading my file but they still seem to take copious notes.  They only seem to read the last few entries anyway and I can't help but think that the file is an insurance policy. 

Another observation is the systemic movement of staff does nothing for building communication. As a patient with a disease that I have never experienced before a lot happens between consultations which could be sorted out by a telephone call or e-mail.  The one stable person is a consultant but he is protected by his secretary, everything is filtered by her.  I don't see why you cannot have e-mail contact.  On the communication front, they are very good at providing my GP with a letter describing what they have done every time I see them.  I get a copy too! 

As we headed for Friday I met a member of the autonomic nervous system team who asked me what I thought the diagnosis was and I said MSA, and he nodded.  That the nearest I got anything like a conclusion.  They were not going to commit themselves until I had the autonomic nervous system test  and a further test with the urology department, so another trip to London was in the making.   

P.S. I am getting lonely writing in a vacuum. Can somebody talk to me! Tell me why you are reading this and what you find interesting about it? Are you a fellow sufferer? I know you are reading because the Stats tell me we've had over 320 hits from as far afield as India and New Zealand.