Back in 2011 I started to notice I was suffering with an unusual, unexplained feeling in my throat when swallowing which I was seen by the Ear Nose and Throat specialist but again no diagnosis. This was the start of my health problems. 2012 I suffered with extreme cramp from ankle to buttock, which was after a fairly manic day on my feet. My previous job was working on my feet all day delivering and sorting post for the Local Council so no concerns with movement. After this extreme cramp I began to experience tremor in my legs, lower back pain and weak muscles. I went through the usual steps, GP, Hospital Physiotherapy, Private Chiropractor, MRI Scan on my spine only under local Neurology Services and nothing could be explained to me or any outcomes.
I then changed GP and was re-referred back into all appropriate services, including Hospital Physiotherapy, Neurology, and Pain Management etc. Finally after 4 years of trying to get answers I am happy with the pathway for my recovery. After numerous MRI re-scans and assessments it was deemed that they had missed my brain and this did show changes to my blood vessels. Luckily MS was ruled out. I am no longer under Physiotherapy and I have no muscle wastage. I am however still under Pain Management as for me I am unable to take the “over the counter pain killers” NSAIDS as I am allergic. So I am only on Amitriptyline 30mg which relaxes the muscles. This drug can be given to many people with different health issues.
I had various tests with Neurology locally with no confirmed diagnosis so the next agreed step was to be referred to Queens Square in London UCL Institute of Neurology.
I was seen by a Dr Professor Warner on 2 separate occasions with a now confirmed diagnosis of “Functional Tremor” and Chronic Pain. I am now waiting to have another assessment with the Movement Disorder Clinic of multi-agency Team to see what they can offer in terms of treatment. They have confirmed that my nervous system is still intact however the brain signals are distorted which is why I have been experiencing so many different symptoms that have so far been unexplained. I have also been informed that I have a “Bulge” second stage of a slipped disc in the lower back but that this does not impact on the nerves.
In March 2016 I had another assessment completed which gave me additional Mental Health diagnosis of Obsessive Compulsive Disorder, Generalised Anxiety Disorder and Eating Disorder Unspecified. The Consultant confirmed that these symptoms are all interlinked with the Tremor.
Like me there is little support for people with similar disorders. I was hoping I too could link in with support groups to discuss. My recommendations are to keep going to the appointments through the NHS. I wouldn’t pay private now as the results are never received well with the NHS professionals. If you are not happy with the results from your GP, it is within your best interest to seek for a second opinion by another GP. The issues are that this disorder is not commonly investigated and there isn’t loads of information out there. My movement has deteriorated over the last 4 years which has impacted on all aspects of my daily living, my family and my partner at only 34 years of age. However there is some hope out there. In order to support me I have a Blue Badge (under exceptional circumstances), Awarded Personal Independence Payment for daily living (replacing DLA), disabled railcard, disabled bus pass and NHS exemption for prescriptions as I am unable to collect. I have also just had a completed Social Services assessment which deemed I needed supportive aids within the home environment. I walk with a walking stick when I am not at work. My work involves sitting down at a computer most of the day. Work has also assisted me through Occupational Health with equipment adjustments for my workstation.
My social circle has also impacted on what I can do when out and about everything has to be planned as I am not very good with standing so plenty of seating. My only form of exercise is swimming which is not weight bearing. This effects when shopping for clothes or food which is why I do more on line these days as the enjoyment of shopping is shadowed by the constant pain and lack of movement, every step can be an effort, as we all have good and bad days.
My understanding is that this is all down to the brain requiring reprogramming. So CBT Therapy is usually the starting point. I would recommend this as I felt it was very rewarding better than counselling.
I am still working full time and conscious that my health doesn’t affect my job role.
I hope my story has given other people a better understanding of what Movement Disorder is and what is available to everyone. I have worked so hard and persisted with my health to get the diagnoses that I need in order to prevail with a treatment plan.