All you need to know about the autonomic nervous system

I didn't know that I had won until MSA came along and the testing that goes with it.  It must be a very popular test as far as I can see because I have to wait over a year before I was called in.  Without this case being completed I was not going to get a diagnosis.  The main reason for the delay is that there are very few centres and the one in the national hospital was dealing with referrals from around the UK and continental Europe.  It is used not only to detect MSA type problems, but also the people who faint on a regular basis and others with heart and blood circulation issues. This is because the autonomic nervous system controls blood pressure/flow, the bladder/bowel and other things as well, including swallowing and voice; it is important piece of kit. 

Now, about the tests, the most exciting one reminded me of the American water board torture and being strapped for an execution by lethal drugs.  I was strapped to a bed, then tilted from horizontal to 60° and just left there.  My blood pressure was continually monitored as the longer you are on a tilting bed the more likely it is that you will faint or have double vision or something equally unpleasant.  I felt okay and lasted out the 10 minutes but it was a long time.  This test is followed by another which required me to put my hands between two blocks of ice and keep them there for as long as I could.  This was followed by a breathing test which involved blowing into a tube and maintaining a steady pressure for 3 minutes. This was followed by another similar test, gripping a tube for 3 minutes as hard as I could.  The technician was very good and I asked her how she arrived at doing this work.  She said she was a medical secretary and quite often patients were standing and the next minute flat on the floor! She thought this was unusual behaviour, so she wanted to know more. I spent 1.5 hours in hospital.   It is frustrating not to be given any Indicative results.

I am not very enthusiastic today because I fell onto my back opening the front door around five o'clock yesterday afternoon.  My autonomic system was not functioning properly and my low blood pressure made its presence felt.  The uncertainty in walking and particularly taking steps backwards doesn’t help.  There I was stuck on the floor just like a beached whale and nobody else in the house.  I tried all sorts of different ways of getting up without success.  I was there for nearly 2 hours feeling foolish until I remembered my phone in my pocket. I phoned a friend who came and helped me up, shaken but hurt. My pride had taken a battering too as I go to the gym regularly, so that’s it for now and next week I am on holiday.which is what MSA can do.  I can remember that I

Getting Used To a Changing World

I waited a further 12 months to have my autonomic nervous system test hand and until it was completed the medical people were not going to confirm any sort of diagnosis although informally everybody referred to it as MSA.

Before going much further I think we should have some sort of definition  so we know what it is and I have chosen the MSA trust version;

“Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and women. It is caused by degeneration or atrophy of nerve cells in several (or multiple) areas of the brain which can result in problems with movement, balance and automatic functions of the body such as bladder and blood pressure control.”

It is more prevalent in men than women, there is no cure, and it seems average life expectancy from the time of diagnosis is 8 to 10 years.  This helps to focus the mind and I must say that cleaning the car or washing up seems peripheral now.  Things like healthy eating taking exercise and alcohol in small doses scheme irrelevant.  So, I have a large gin and tonic most evenings which I thoroughly enjoy, not least because I am no longer reprimanded by my wife for drinking too much!  If I want a cream doughnut I get one, no hesitation.  The only downside to this I think is the time it takes me to eat; I'm always last by some margin.  The best way to keep me occupied is to give me a beef steak for tea.  I would be at the table for hours, it is a good job it is not my favourite food.  So in some ways it is liberating.  The hard part is not knowing what will happen next, which part of my body will malfunction and for how long.

My energies have gone into trying to manage this condition.  So as I have been working less and hardly travelling anywhere that time has been progressively been taken up in the gym working on exercises designed by the specialist physiotherapist from my local hospital.  She is very good and has worked with people with my condition.  She has given me exercises to do morning and night to strengthen my core muscles and improve my posture which is dreadful.  I even got a gym ball for Christmas, how sad is that?  Exercising might be good for me but it cannot stop the inevitable deterioration of my ability to walk, talk, carry things, gardening and unscrewing bottles.  I suppose I have to learn to decline gracefully, and accept help when it is offered.

As the result of the five days of tests, I have increased my team of helpers considerably with the speech therapist, continence nurse and a specialist physiotherapist as well as the team in London.  I think this is where the NHS is truly amazing, all these people looking after me!

I eventually get the invitation to the urology department and had to take my trousers and underpants off and lie on my side to expose my back passage.  The doctor then proceeded to connect a needle to a computer which measures the communication frequency between the nerves around my back passage and the brain.  They mentioned that it would take about 20 min not too uncomfortable and moving the needle around, but it was the way in which they could confirm or not that I have MSA.  Not only that  the consultant who devised the  test, is retiring, so she wanted to show the other younger doctors believe how to do it and as it turned out I was the guinea pig.

 Next week I will talk about autonomic nervous system test

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. 

Changing Life

Although I finished my last post with me getting ready for my five days of tests in London, there are a few things I would like to share before I move on. One thing I have discovered, nobody is in a hurry in the NHS, and the referal system could do with a bomb under it. One piece of 'advice' sticks in my mind, was from the head of my GP Practice, who said that he thought I had Parkinsons at a Birthday party in 2008, but didn't say anything.  What was interesting was that when I met him again in the surgery to tell him my good news, haha, he told me not to look up Parkinsons on the internet because it would scare me, and complicate matters. It was too late, I already had, as one would, and this way I discovered that there was an MSA Trust.

I now began to think about what I could do to slow the onset of this disease, as nobody has a cure for it. It took me to a place that I have avoided for years, the gym. I decided that the adage, 'use it or lose it,' was true, and I should find ways of utilising my body, not least because I am a moutain walker, and couldn't walk the mountains anymore, my mountain days are over. Gym membership came as a birthday present January 2009, I became a fully fledged associate member of the Devonshire Arms Spa. This was a laugh a minute, me in a gym, with very fit young men, and equally fit young women wearing the usual gear, not talking except when their phone rang, and there would be an excitable outburst of conversation. Once finished they would go back to listening to their I-phone music, it is bizarre how you can have several people in a gym who see each other all the time but don't speak to each other. So I embarked on my gym career, and I must say that my claim to fame is that I could do 36 leg presses pushing 90kg, am I proud or what! My family think this is all highly amusing, so much so I got a Christmas present of the correct T-shirt to wear in a gym, but more seriously this has turned out to be a salvation because I was losing work from clients. Once they heard that I was ill and a contract was coming to its end often it was not renewed, but those who knew me better continued to employ me. I am lucky in one sense that most of my work can be done through the computer and telephone, but in my view there is implicit discrimination at play. So with doing less work I had more time on my hands, and still no confirmed diagnosis.

Another interesting by-product of this illness, is that you have to tell the Vehicle Registration Authority of it and they have to consult with your doctors to decide whether you are fit to drive, I received a three year renewable license. I saw this as a positive outcome.

But my urinary problems continued and I was with the Airedale urologist Mr Keonig, because I had an awful few days when my bladder refused to empty, even after the operation. It was extremely painful and worrying, so the GP came to see me, went away saying he would check it out with the urologist but he called back almost immediately and said he wanted me in hospital, and would order an ambulance. We refused the ambulance and got to Airedale emergency where I should have been admitted straight away, but inevitably the piece of paper was put at the bottom of the wrong pile. For a man with a bladder about to burst this was not funny. Eventually I got to the ward and the young doctor recognised me from the operation, she got on with the job of releasing the bladder, which was an almighty relief for me. Now, I can look back on this and see how it fits so well with MSA. So life in the slow lane had begun.

Oh yes there is another side of it which should be noted for those who still sleep with a partner, it is being very noisy in bed when asleep, talking to all and sundry, shouting, screaming, and the rest. But worst of all for the partner is the pinching and squeezing of any part of the anatomy, so much so there is bruising. Yet another charming element of Parkinson/MSA. I don't know how Liz lived with it.



Agony!