Person with ME


My experience of ME is a bit different from most this is why I think I took so long to get the answers I needed. Here is my story.

In December 2005 I suddenly developed a neurological condition within days of having a flu jab. I was left with an altered sensation down the right side of my face, speech problems and problems with balance. Ever since then my condition has worsened, and I now have difficulty walking, my right foot drops so that my toes drag on the ground, and my legs will only move slowly. I also get myoclonic jerks which cause the whole of my upper body to jerk upwards rather like I have been startled. I have no control over these movements.

This lens discusses the difficulty that I encountered in getting a diagnosis and points to further information about my condition. I hope that this lens will be of benefit to other people who are suffering in a similar way.

I don't know if you are like me, but the first thing that I usually do when I am ill (if the illness persists) is to visit my GP. I tend to expect them to know what is wrong with me, or if not to know someone who does! I, like many people had great faith in medical science. My faith in it has now been altered slightly.

As I said in my intro, I started to experience strange neurological symptoms within days of having a flu jab. At first I thought that the dizziness that I experienced was either a reaction to the flu jab(I was told that you can get mild flu-like symptoms with it) or that it was the result of the new blood pressure tablets that I was given when I had my flu jab, the nurse had taken my blood pressure when I had my jab and found it to be very high so the doctor prescribed a different drug. So I put up with it for about a week.

After a week the symptoms hadn't subsided so I went back to my GP. He changed the blood pressure tablets, signed me off work and told me to come back if there was no improvement. I continued to get worse. The right side of my face felt numb, my speech was hesitant, I found it hard to concentrate, got tired very quickly, and felt dizzy if I stood up. So I returned to my GP.

This time I saw a locum. She gave me a thorough examination and referred me to a neurologist. I think that she thought i had had a mini stroke due to my history of high blood pressure!

I saw the neurologist about 2 weeks later. He did all of the usually neurological tests and said that he could find nothing wrong with me and put it down to stress! He basically said that I should return to work.

I had tried return to work not long before seeing the neurologist. I lasted a couple of hours. My work involved caring for profoundly disabled young people and was quite physically demanding. I struggled for a couple of hours, but my dizziness and concentration got worse, and I was feeling disorientated. Returning to work was not an option as I would have put those whom I was caring for at risk. So I returned once more to my GP.

This time I saw another locum. He could see that I was still not right and decided that I should be referred to another neurologist for a second opinion.

I had to wait a couple of months this time. The NHS is great and I am so glad I live in a country that has free healthcare, but sometimes waiting can be very frustrating particularly when you have a condition no one seems to be able to diagnose!

My condition continued to deteriorate during this time. I found walking increasingly difficult. I found walking difficult fairly early on into my illness. At first it was due to feeling dizzy and getting tired easily, but now it was something more.

At this time I was trying to walk every day and would walk a one mile circular route very slowly. Having worked with disabled people, I knew the importance of not just giving up. If you stop using an ability the chances are that you will loose it! I was determined not to become deconditioned. My daily walk became increasingly difficult. My right leg was not moving in the way that it should, and became particularly bothersome towards the end of my walk.

By the time I saw my second neurologist I was struggling to walk very far, although I did have the odd day when my walking ws not as bad. This neurologist was much more thorough. He did the usual neurological examination, took blood tests and sent me for a MRI Scan, which I had about a month later.

I received a letter from the neurologist in April 2006 to say that the MRI was clear and a follow up appointment was booked for July! My condition continued to deteriorate.

It was the week before May bank holiday weekend that it started. At first it was happening occasionally. My head and upper boy would suddenly fly up as if I had been startled. The sensation is a bit like having the hiccups, only involving the whole of your body. I later found out that the medical term for this is myoclonus. I didn't take much notice of it at first. Then on the Saturday it started bigtime!

I sat down to watch TV and my head flew back and hit the back of the chair with great force. This kept on happening. At one time I was having 2 a minute. My neck was starting to hurt because of the force of the movement. When I stood up they stopped, but as soon as I sat down to try and relax they would start again. If I lay down my whole body would convulse.

For 2 days I put up with it. It was a weekend, and a bank holiday weekend at that! So I knew the doctors surgery wouldn't be open until Tuesday. By Monday I had enough and called the out of hours doctor. He wouldn't come out to me but prescribed diazepam. This eased it but didn't stop it completely.
I have had this symptom ever since. Sometimes it is worse than others. It is always worse when I relax. Trying to sleep at night can be really difficult as I jump about so much. In recent months I have developed new variation on this symptom. My muscles contract, and if I am laying on my back I sit up! This is very disconcerting especially when I am just falling asleep! If I lay on my side, my head flies forward and my knees come up towards my chest.

These aren't the only involuntary movements I get. The muscles on my arms and legs twitch, I can some times see them moving live waves under my skin. My fingers and toes sometimes twitch and move on their own. Having a body that moves on it's own can be amusing, but generally it is extremely uncomfortable.

By the time I went for my follow up with my second neurologist I was walking with a stick. My mobility had worsened and I was having fewer good days when my symptoms were bearable. I was hoping that the neurologist might be able to shed some light on my illness, or at least order some different tests. My hopes were soon dashed.

The neurologist saw that I was struggling to walk and asked how I was doing. I told him about my increased symptoms, particularly about the myoclonic jerks. He examined me again. I had a couple of myoclonic jerks while he examined me. After the examination he said that my MRI scan was clear, therefore there was nothing he could find wrong with me. He said that I should go back to work! I mentioned the possibility of it being M.E. but he said that he knew nothing about it. That was the end of the consultation, and I was discharged from his care.

I was so furious that I tried the next day to drive the 20 miles to work. This wasn't a good idea, but it proved a point. My concentration was going during the last 5 miles of my journey, and when I got there I could hardly walk. Going back to work was still not an option.

I went back to see my GP, this time he didn't know where to send me. I mentioned to him the possibility of it being ME, but he wasn't sure that my symptoms matched. He suggested that I tried to find someone who he could send me to.

I had been doing some research on the internet to try to find an answer to my condition. This is how I came up with ME/CFS(Myalgic Encephaloyelitis/Chronic Fatigue Syndrome). But my symptoms also pointed to the possibility of me having MS (Multiple Sclerosis). So I started to find out all that I could about both conditions.

I found out that their symptoms can be alike. I joined an MS forum to discuss my experiences and found many who like myself were struggling with strange neurological symptoms and who could not get a diagnosis. One woman had been ill for 6 years and still didn't know what was causing it! Others who had MS, had taken years to get a diagnosis, having had normal reflex tests, normal MRI scans and normal lumbar puncture results at the beginning of their illness. MS is difficult to diagnose and depends on the skill of the doctor. It can also take a while for physical signs to show up in a way that they can be detected.

By the end of my research I was still uncertain about the cause of my symptoms. Was it MS or was it ME?

I found a neurologist on the internet and emailed him. I told him about my symptoms and asked if it would be worth me going to him for a private consultation. He said that looking at my symptoms, and the fact the my MRI had shown nothing, he thought that it would be a waste of time me seeing him. He thought that the most likely cause was ME/CFS

Now, you may have thought that having had a clear MRI, and the words of this consultant would have put my suspicion of having MS to rest. But it didn't. I had read on some leading MS websites that a clear MRI does not rule out the possibility of a diagnosis of MS. There are other tests that should also be done to rule it in or out.

So I returned to my GP. He contacted the local Primary Care Trust and found the name of another neurologist located in a neighbouring Trust. I saw this neurologist in October 2006.

The interesting thing about seeing this neurologist was that he saw me 'blind'; he didn't have any of my notes. So he had to start from scratch with my diagnosis. He did a thorough neurological examination, and said that he was going to admit me into hospital for two days of tests. He warned me that he still might not be able to give me a diagnosis even after the tests, as there is still much that neurologists don't know. This was refreshing in itself; a doctor who was prepared to admit that medical science doesn't know everything. Fortunately he is based at a specialist neurological unit and sees many cases where an explanation isn't easy to find.

In January 2007 I was admitted into hospital for two days of tests. At last someone was taking me seriously and was leaving no know stone unturned. I had an MRI of my brain and spinal cord, an EEG, a lumbar puncture, various blood tests, a consultation with a neuro-psychiatrist and a chest x-ray.

Six weeks later they all came back clear. I was contacted by the neurologist who told me that in his opinion I probably had M.E., as my symptoms were consistent with this. Fortunately he was well enough informed to be aware of the physical nature of ME/CFS

So this is where I am today. I finally have a diagnosis. My involuntary movements have gotten worse and my mobility continues to worsen. The need for bio-medical research is crucial.