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Desperate - misdiagnosed??

Hi 👋 I am Sarah. Nice to meet you all. Sorry in advance for my very long initial post. It is actually a letter that I spent a long time writing to send to my gp because I can’t explain myself properly by speaking. I understand if it’s too long for you to read, I’m just desperate to know what is wrong with me after 13 years of hell. I started becoming quite unwell in 2010. Eventually, in September 2011 I was diagnosed with ME/CFS. Soon after this I had to leave my career that I had worked very hard for as a graphic designer. Having done A LOT of research I feel I have been misdiagnosed and actually have MS. Over the years I have suffered a great deal as a result of the symptoms of my illness. The symptoms I have had and experience now are: • Extreme overwhelming fatigue • severe aches and pains in my lower back, hips and legs, often also in neck • headaches • lack of concentration • tight sharp pains in my chest/under my ribs – so severe at times I have been hospitalised. This led to discovery of chronically diseased gallbladder which has been removed in 2013 and the pain still remains. • Chronic constipation and blockages at the anus that I have to physically remove • Lack of sensation in parts of body • Sharp stabbing pains in stomach and bowels after eating • Bladder never feels empty. I have wet myself on occasions in bed because too sleepy to get up or no warning • Tingling / on edge feeling in hips and legs • Spasm feeling in muscles • Stiffness in my joints and lower back causing difficulty with movement • General weakness and no strength Legs giving way • Feeling off balance, lack of coordination, feeling unsteady and stumbling, lack of spatial awareness • Confusion, words get muddled or don’t come out right, difficulty saying what I want to say and understanding what people are saying to me or asking of me • strange sensation in throat, feels swollen and strange clicking noise when swallowing. The symptoms have been so severe that I have been confined to my bed for considerable amounts of time. As I mentioned above, I lost my career due to my illness, I have also lost any “friends” that I had due to no longer being able to socialise and keep up contact. I have also become very distant from my family as I cannot plan or make arrangements to see them because I never know how bad I will feel and they are reluctant to visit me as I am often not up to visitors. They also rarely contact me through fear they may disturb me or wake me up as I am so often asleep. I have missed my opportunity to have a family of my own, as the years have passed the hope of being well enough to achieve this has faded away. I have tried many treatments to try to alleviate my symptoms. These include occupational therapy, graded exercise therapy, cognitive behavioural therapy, pacing and various medications. I have also tried lifestyle changes such as meditation and relaxation techniques, changes of diet including non- dairy and gluten free. I have tried alternative therapies such as acupuncture, Homeopathy, reiki, kinesiology and colon cleansing. I have been willing to try anything in an attempt to regain my quality of life, however nothing has given me any significant improvement. My symptoms do fluctuate, however, even on a “better” day I find myself only managing to be awake for 5 – 6 hours maximum before I need to sleep and rest. If I am unable to do so I feel absolutely terrible – it is very difficult to explain. I feel like a zombie, like I am detached from what is going on around me, I feel completely drained. On a “normal” day I manage about 4 hours awake before needing to sleep. I will then sleep for several hours. I have no problem sleeping at night, even after a lot of sleep during the day. I do have significant pain in my back, hips and legs when I am resting along with the feeling that of an electric current or tingling sensation. During my waking hours I mostly have pain in my back, neck, hips and legs and a lot of stiffness. I also feel very weak and have no strength. I have had several inflammatory problems including recurring Uveitis, a chronically diseased gallbladder and polyps in the bowel. There is a history of Arthritis and Ankylosing spondylitis in my family. As a child my legs would give way and I would fall to the ground. I have also experienced sudden blindness in one eye which only lasted about an hour. As you can probably imagine, living with these symptoms for so many years has affected my mental health significantly. I have suffered with extreme anxiety and bouts of awful depression. In the last 6 -8 months I have found it increasingly difficult to prepare and cook meals. My symptoms seem to be worsening. I am finding movement increasingly difficult. I am often asleep over meal times or if I am awake, I am too fatigued or feeling too unwell to prepare and cook meals. This has resulted in significant weight gain as we are having to rely upon takeaways to eat most days. I lose concentration and have forgotten that something is cooking, my mind drifts off, I just go blank and do not think about anything. I can find myself just staring out of the window having forgotten what I am doing. My lack of strength means I often drop things and find pots and pans very heavy. I am desperate to be able to live a healthy and fulfilling life. I feel like my life has been wasted. Thank you all for your time and look forward to getting to know you xx

Have you had an MRI Sarah? Could you see a neuro privately who could refer you for one? It’s a fine letter though I might put your symptoms in bullet points to make it easier to read. But your gp is limited in what they can refer you for and it could take months or years.


Unfortunately private is not an option for me. Thank you for your help x