I don’t have a diagnosis yet and I realise that I’m probably years away from getting to the bottom of what might be going on. But I wanted to know what your opinion is regarding sharing your concerns with family members? I must admit, I’m struggling a bit with the lack of support and find it hard not being able to talk about what’s going on. Equally, the last thing I want to do is cause them unnecessary worry.
My issues began in August 2021. I woke up one morning with a weird pinching sensation in the front of my chest, just below my sternum. Over the course of about 3 or 4 days it gradually spread around to the my right side and resembled the sensation of being squeezed or like having a tightness under the skin. The GP was concerned that it could be related to gallbladder surgery I had back in 2007, so I had a chest x-ray, ultrasound and blood tests which were all normal.
The problem wouldn’t go away though. I tried physio, osteopathy and made a couple of trips to the GP because I was convinced it was nerve related. Eventually I was told it is just ‘one of those things’ and it will rectify itself in time. Oddly I found that wrapping something like a back support around my middle or wearing a tight vest would give me a huge relief from the discomfort.
Five months later, in early January I woke up in the early hours of the morning feeling quite unwell. The only way I can describe it, is that it felt like I had snake wrapped around my lower chest, trying to squeeze the life out of me and all of the muscles in my lower abdomen felt as though they were crawling and tightening. Obviously I was quite concerned by this and made a trip to the A&E. A GP examined me and said that my symptoms were due to anxiety (although I didn’t feel as though I had anything to be anxious about) and I was sent home.
The discomfort seemed to get worse over the coming days. I developed a tremor in my lower jaw and I started to get a burning/buzzing squeezing sensation in my lower back, just above the coccyx. My left hamstring began to feel tight too and I developed an awful incessant buzzing in the middle of my head, as though my brain was being zapped with electricity. My sleep suddenly went from 8hrs per night to less than 3. I couldn’t nap during the day and I constantly felt as though I was too hot.
About 7 days later I started to develop a clumsiness in my right arm. I struggled to use the mouse on my computer and my employer also noticed that something wasn’t quite right with me so I was sent home sick.
My GP was adamant that I was just experiencing anxiety and that my symptoms are psychogenic. He prescribed me a course of amitriptyline to try and help me sleep, but each time I went back due to a lack of improvement, he just increased the dose. I was convinced that something was wrong in my CNS, but because the GP didn’t take these concerns seriously, my family just assumed that I was having some kind of breakdown and started suffocating me with distractions and overly joyful visits. 
Eventually I saw a different GP who said she would feel more comfortable knowing I’d been seen by a neurologist. I had a consultation at the beginning of July, brain and spine MRI a few weeks later and now I’ve been told there’s an approximate 15 week wait for scans to be reported on.
My Job requires me to have an annual medical because it’s a safety critical role. They’re not satisfied that I currently meet the requirements and so I’ve been on long term sick since the beginning of April. They won’t allow me to attend a second occupational health meeting or apply for another medical until the MRI has been reported on. I understand that this is reasonable, but with the current wait - my statutory sick pay will probably run out before then.
So the dilemma…
Should I share my concerns with my family or wait until the MRI has been reported on? I’m sure they think I’m imaging all of it. While the symptoms aren’t anywhere near as intense as they were back in January, most of them are still present every day, but because they’re not visible - they just assume they don’t exist.