Do you mind if I reach out to you for a bit of a hand hold? I am sorry this is an essay.
I became unwell in January 2016 with a nebulous collection of symptoms - crashing fatigue, hair loss, mouth ulcers, pins and needles and crawling sensations in my face, burning palms and soles of feet, sensations of wearing tight tingling evening gloves and socks all the time. In addition, a frightening decline in cognitive abilities, memory and decision-making ability. GP was unimpressive and diagnosed me with Chronic Fatigue Syndrome after three months. I haven’t been able to work since this time - was an ICU nurse.
Two further GPs later by the December I had diagnoses of Hashimoto’s autoimmune hypothyroidism and extremely low ferritin, folate and Vitamin D. These issues have all responded well to medication and on a just-in-case basis I also started HRT at this point (am now 45).
I still couldn’t reach anywhere near my ‘normal’ level of cognitive ability or physical stamina - frequently having to go to bed at 9pm, sleeping as if I was unconscious, waking at 11am feeling extremely unwell and then sleeping again for 3hrs in the afternoon. I had a three-month period of awful urinary urgency and nocturia with no infection, accompanied by frequent choking on food and drink, biting the inside of my cheek on the right side, feeling burning ‘lines’ around my ribs, feeling my right leg was heavy and stiff at the hip when walking, fleeting incidents of vertigo including falling over several times in the street and at home, frequently misjudging where I was ‘in space’ meaning I was walking into doorways rather than through them, walking into tables rather than past them. I also developed a feeling of cold wetness at the right lower leg which was really disconcerting.
I feared I might be developing dementia and was disappointed to get a patronising head tilt and a prescription for antidepressants from the GP.
December 2017 saw the start of three months of new apparently CNS symptoms - every time I lay down on my left side I would experience what I know to be multifocal seizures. I’d sense it was about to happen, the right side of my face snarled like Elvis (only a lot less attractively) and I’d feel a surge of ‘power’ down my spine causing my right arm and then right leg to jerk up. I also began to experience salvos of repetitive twitching in various arm and leg muscles, trigeminal neuralgia in the right side of my face, loss of taste and bilateral tinnitus. FINALLY my GP accepted my concerns about ‘something neurological’ and referred me to Neurology.
I had an appointment in May (normal reflexes, Neurologist not concerned but said let’s do an MRI head just in case). Had the MRI in July without contrast, and received a letter a fortnight later explaining that to his surprise the MRI show “many areas of significant abnormality”. He went on to say that it is unclear whether these lesions are due to autoimmune inflammation or vascular cause so he is booking a lumbar puncture appointment for me.
I’m surprised to feeling such a mixed bag of emotions… I’ve been saying for over two years now that I don’t believe the CFS diagnosis is correct because just doesn’t take into account a number (most?!) of my symptoms. I have really felt that my GP has had tunnel vision and I do feel let down. However I also know full well that MS and other conditions that have neurological symptoms can be tricky to pin down and it doesn’t seem uncommon for a diagnosis to take a while. I do worry that I’ve experienced several significant episodes or relapses (if indeed it is MS) and have been left with the tinnitus, trigeminal neuralgia and frequently twitching in hands and feet.
Thank you to anyone who’s taken the time to read all this, I really appreciate it.