Learning To Live With ME/CFS - My Experience So Far

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 hessitant, 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 blod 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 refered 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 recieved 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 occasionaly. My head and upper boy would suddeny 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 woudn'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 exmination 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 possbility 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 possibilty 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 begining 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 possiblility 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 exmination, 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 neur-psychologist and a chest xray.

Six weeks later they all came back clear. I was contacted by the neurologists collegue who told me that in his opinion I probably had M.E., as my symptoms were consistant 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. There is nothing that can be done in terms of treatment for people with ME/CFS except to teach them how to manage their symptoms. other than that it is a matter of letting the disease run its course. The prognosis isn't good, as it is estimated that only 20% of people fully recover. 25% go on to develop complete disability.

ME/CFS is an illness that affects the lives of hundreds of thousands of people worldwide. Many of whom have their lives totaly ruined. Some are confined to bed most of the time other have to use a wheelchair to get around. Most lose their jobs and never get back to full-time employment.

Some research is being done into the physical causes of th disease, but the research is patchy and is affected by the lack of government funding. This is in spite of the fact that this illness is costing governments millions of pound each year in benefits and lost tax revenues.

I have list some links to useful websites below. Thank you fortaking thetime to read this lens.

After I saw my third neurologist who insisted that I have ME, I once again searched the internet to find out more. I cam accross a website of a doctor in North America that specializes in ME. I emailed him to ask if he knew of anyone in the UK who used his diagnostic methods. I also told him my symptoms. He wrote back and said that he didn't think that I have ME. He also said that he would be in the UK in 10 days time and that he would see me

I saw him in late April 2007. I got to talk to him for an hour, in the UK you are lucky if you get 20 minutes to see a consultant! He was unable to examine me as he isn't lisenced to practice medicine in the UK, but he asked me many questions about my codition and medical history. He thought that my movement disorder is dystonia. He also thought that the flu vaccination that I had hours before becoming ill may be significant. Apparently production at the factory of one major supplier of flu vaccine was shut down in 2005 when bacterial contamintion was found.

He has agreed to take on my case and has asked to see copies of all of the tests. So, the story continues. I may not have ME after all. One thing is for sure, I now have a top ME specialist on my side.

A number of things have happened since I last updated this lens. My condition has continues in a downward spiral. I went back to the National Hospital For Neurology and Neuro Surgery, Queen Square, London for more tests in April 2008. I still ended up with a psychogenic diagnosis. What I have since found out is The National consider ME to be a psychogenic disorder. When they see ME/CFS on someone's notes they immediately read psychiatric case. This is despite the fact there are over 4,000 papers that show physical abnormalities in people with ME. Abnormalities they refuse to test for.

In April of this year (2009) I was asked to go back to see the neuropsychiatrist at the National. I thought this was to confirm or deny whether my problems are psychogenic or not. I was very wrong. I never had a psychiatric assessment at the National, but I had been given one at another hospital earlier on in the diagnostic process, and was found to have no evidence of conversion disorder or psychiatric problems. It would seem that it is Neurologists who diagnose psychiatric conditions at the The National; psychiatrists merely rubber stamp their decisions. The meeting was really to decide if I am suitable to be admitted into their neuro-psychiatric ward for intensive therapy which consists of Cognitive Behavioural Therapy and Graded Exercise Therapy. The same pseudo-treatments that the UK NHS offers people who are suffering from ME. Fortunately it was decided I was not suitable as I have recently lost my eldest son and I'm still grieving, and also because I don't believe it will work. Apparently CBT and GET only work if you believe!

I have been discharged form the National now and referred back to a local neurologists. But the National labelling me as having psychogenic problems has left me without any real medical care. As soon as the neurologists see my file they don't bother with a full examination. The last one I saw asked me to walk on my toes and then on my heels. I couldn't keep my balance, she and the nurse had to hold me up! She ended the consultation with the words, "I can see you have balance problems but there is nothing neurologically wrong with you!" I later found out she has discharged me, so I am currently no longer under the care of any neurologist. A psychogenic diagnosis is a virtual guarantee that you will no longer receive proper medical care. Doctors can be lazy and prefer to rely on the notes of their colleagues than on what their patients tell them.

My list of symptoms has increased in this time. I have some symptoms that look like parkinsonism, my writing has become small and badly formed, I 'freeze' and cannot initiate movement at times, my legs are very stiff and I cannot move my fingers to my thumb without my fingers sieving up. I have increased balance problems with a tendency to fall backwards and also increased cognitive difficulties. The distance I can walk has decreased and I now have to rely on using a mobility scooter. A walk around the supermarket is about as far as I can walk now, and this is with considerable difficulty.

So the big question is do I have ME? Well, if I was diagnosed according to the Canadian Criteria I probably have. Dr Byron Hyde's paper The Complexities Of Diagnosis explains what he sees when he examines people with Myalgic Encephalomyelitis, again this describes me. Unfortunately the field of ME/CFS is dominated by a small group of psychiatrists who insist it is all down to psychiatric factors. The current NICE Guideline for CFS/ME reinforce this belief. There will always be some uncertainty as to who has ME and who doesn't until people are properly tested. There are tests that can be used to confirm a diagnosis, but some are expensive and most people are denied them. There will always be some doubt in my mind until I have been properly tested. I'll keep you updated.