About halfway through December I had the first problems. I was reading with my head at an awkward angle for a prolonged period, with my head rotated 90DEGREES to the left and kind of held up just on the neck. After moving my head, I got a sharp pain in the back of my head, just above the spine and slightly to the left. I was rubbing at it trying to get some relief, checking my phone, when I felt a tingling sensation run up the back of my head and onto my scalp, then my vision suddenly went black and reacted with a jump out of bed. My vision came back almost straight away, but the numbness stayed in my head. The next day I felt very drained and still had back neck pain, so much that I could barely keep my head up. I went to lay down and experienced the vision loss again while watching TV.
I was too scared initially to go to the doctor, hoping it would resolve itself quickly. The numbness stayed for over 2 months, gradually getting better until it was only occasional numbness at the hairline and forehead. In the couple of weeks following I developed a problem with my right eye where I couldn't focus on most things at a short distance, like letters. I could read perfectly with my left eye. The neck pain was worst in those few weeks, where I couldn't really hold my head up and had what felt like electricity shooting up my neck often, with other twitches moving my head involuntarily. I also felt extremely tired when I was awake, but also unable to sleep. I'd get the sensation of falling when trying to sleep that would wake me up any time I drifted off. I felt weird all the time, like I couldn’t pay attention to anything.
I went to the doctor after about 3 weeks of numbness, where he advised I go to hospital and have some tests done. They ended up keeping me for 16 days, giving me an MRI and a CT angiogram to rule out: brain cancer, infarction in the brain, damage to the arteries in the neck, and MS. During my time in hospital the vision in my eye improved and numbness became limited to the top of my head. (With occasional spasming in my forehead and a feeling of numbness coming from the bridge of the nose towards the right eye.) Also, during the hospital, I developed a clicking sound in my jaw, which later turned out to be a double ear infection (somehow missed during examinations of my ears in the hospital, maybe it hadn't progressed far enough). I started getting dizzy spells in the hospital, if I tried to walk even down to the shop for a coffee and back. I felt very weak all the time, and still do but not as much. I also had occasional pains in the chest, and what felt like the sensation when you swallow an ice-cube, but around the lungs. As well as this I had a feeling of being very off cognitively, like strong brain fog.
Since getting out of the hospital some things have improved and some gotten worse. The vision in my eye is seemingly better, but when I look at fluorescent colours it seems to blur my vision. This is also improving. The brain fog has improved somewhat, to the point where I feel like myself again. I did have a few days where the front of my neck was going numb and was advised to go back to A&E by a receptionist at the doctors. The numbness in the neck resolved itself that day and they did no further tests. I still have a feeling of tiredness and fatigue, but it has improved somewhat after adopting a ketogenic diet, intermittent fasting and magnesium supplements.
I've had almost no numbness after this, except the occasional feeling of numbness in the bridge of the nose. I still get quite bad neck pain, which I’ve been managing with Naproxen and Co-codamol, and trying not to sit upright for too long. I’ve started to get pain in both shoulders which is now quite bad, with pain radiating down into each arm occasionally. Any strain I put on muscles feels like too much, it seems to cramp with the smallest pressures. Sporadically I’ve been getting what look like blood blisters, but beneath the skin. First in the hands, now on the inner thighs. Also, I scratched an itch on my arm a few weeks back, and it formed a cluster of small dots on the skin like bruising. If I scratch my arms around the biceps, they form these clusters of dots. I had been getting quite bad tingling in my hands and feet, until supplementing with b12 and b1. Recently I had a full blood panel done, and a thyroid hormone test where nothing was found. I had developed a serious thirstiness that seemed to get a bit better when I drank small amount of saltwater each day.
Sorry if this post seems scattered, I just got off the phone with my doctor today telling me I can’t get seeing any specialists until Coronavirus is sorted. So I’m stuck for answers until this is all over which could be months. The neck and shoulder pain is my main concern, it makes it very hard to do day to day tasks, as well as the muscle pains and some pains in my joints. I can clarify on any points, I know it’s a long timeline with lots to take in.
Thanks for any help.