Welcome To My ME/CFS Lens
In December 2005 I suddenly developed a neuorological 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 conditon 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.
Neurological Condition? What Neurological Condition?
The Difficulty In Getting Diagnosed
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.
Another Neurologist, Another Set Of Tests!
Getting 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.
I Just Can't Stop Moving!
When Your Body Moves On It's Own Accord
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.
Still No Answers - Left In Limbo
If The Experts Don't know, Search The Net!
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?
My Story On Video
Book's On ME/CFS That I Have Found Helpful
Trying to find good information on ME/CFS is not easy. This is due to the dispute that there is in the medical profession as to whether ME/CFS is a real physical condition or whether it is psychological. These books discuss theses issues and shows true M.E. is a real physical illness.
The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome
Jodi-www.Hummingbirdsguide.com says: <br /> more...1 point
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson
Jodi- www.Hummingbirdsguide.com says: <br /> more...0 points
Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
Jodi- www.Hummingbirdsguide.com says: <br /> more...0 points
Chronic Fatigue Syndrome Treatment: A Treatment Guide (Quality Medical Home Health Library) by Erica F. Verrillo
Jodi- www.Hummingbirdsguide.com says: <br /> more...0 points
In the Shadow of Memory (American Lives) by Floyd Skloot
Jodi- www.Hummingbirdsguide.com says: <br /> more...0 points
ME/CFS Or MS? Still Not Sure. Enter Neurologist Number Three!
When Two Opinions Are Not Enough - Get A Third!
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.
Conclusion
The Need For More Research
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.
ME Or Not?
An Update
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.
Now I Get Sound Effects!
Now I Get Sound Effects
Over the past couple of weeks an new variation on an old theme has developed. I now get sound effects with some of my involuntary movements.This is a record of this wonderful new symptom!
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7 Comments:
Links To Useful ME/CFS Websites
Find Out More
Here is a collection of links to some of the best ME/CFS websites.Plese e free to add any others that you have found helpful.
#1
http://www.ahummingbirdsguide.com/
The general public worldwide - including sufferers more...1 point
#2
Nightingale - Home
The Nightingale Research Foundation is a Canadian more...1 point
#3
CFIDS, M.E., and Chronic Fatigue Syndrome Information Index
Information about ME-CFS, or Myalgic Encephaloyeli more...0 points
#4
The ME Association
The web site of The ME Association. A UK organisat more...0 points
#5
The 25% M.E. Group Web Site: The only UK registered charity dedicated to the needs of severe M.E. sufferers and their careres.
The 25% ME Group is a unique nationwide charitable more...0 points
#6
Foggy Friends Where ME/CFS Sufferers Unite - Myalgic Encephalopathy - Chronic Fatigue Syndrome - Post Viral Fatigue Syndrome - Chronic Fatigue Immune Dysfunction Syndrome - Myalgic Encephalomyelitis
Foggy Friends is a support and information website more...0 points
A Severe ME Sufferers Diary
Making The Invisible Visible
News from Invest In M.E.
The british government have invested nothing in the bio-medical research of ME. Invest In ME is a charitable organisation who raise money for bio-medical research.
Fetching RSS feed... please stand byUpdate February 2008
I saw the registrar when I arrived and it soon became obvious they had already decided that my condition is all in my head! He could see that I was having problems with speaking, and I told him that I have memory problems. He made no allowances for this and kept on asking why I wasn't working. He fired one question at me after another and made no allowance for the fact that I was having problems answering him. He phoned my wife and asked if I 'act out my dreams' or 'if I act strangely'! All of this made me anxious, increased my symptoms and confirmed their psychogenic diagnosis!
My consultant said that I had seen three other neurologists and should have just accepted their opinion ( he knows them and they are good men) even though my condition is deteriorating! In the 5 days that I was there all they did was a few blood tests and a lumbar Puncture. I saw two professors of neurology for a total of less than 20 minutes! Both consultations took place on the ward without any real privacy, and my gait (walk) was examined by me having to walk the length of the ward in front of all the other patients.
I ended up being told that my condition is a psychogenic movement disorder! The following videos are about my treatment there and how my symptoms have progressed. For more information about the fallacious diagnosis of hysteria, pschogenic and conversion disorder, read Richard Webster's excellent article
Reader Feedback
Your Chance To have Your Say
I am always interested in the comments and experiences of my readers. Don't be shy - leave a comment!
Found this after having found you on myspace I am becoming a regular pest! Sorry for that just thirsty for info and support. I never connected it before but I have only had one flu shot before and it was soon after that I started my symptoms. I remember my first symptoms being within a month or there abouts. I had other unexplained problems before this but the myclonus started showing up around then. -
Pamela
Posted July 20, 2008
|
Cindy_Moynat
Very interesting lens. I'm sorry about your condition.Please don't give up. Keep your moral up and your "inner you" can realize miracle ,despite all doctors and medicines! Posted May 11, 2008 |
Great page! Please check out my lens on dealing with CFS (among other things) at http://www.squidoo.com/jcavese.
Posted December 24, 2007
SSRI Paroxetine triggered my ME/cfs.
Posted December 04, 2007
| rockycha
Great Site! It's always comforting somehow to at least feel like I'm not alone in this thing. I too suffer from CFS/ME and after my flu shot I was placed in ICU that same day. I was debilitated all over again. I'm journaling my current progress too. http://rockycha.wordpress.com Posted October 03, 2007 |
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