Recently I've been dealing with transient loss of sensation and pins and needles in my left nostril, eye, neck, hand and foot. It comes and goes, and seems to be caused by movement. A few weeks ago, I ended up in A&E with stroke like symptoms all down my left side. They ruled out stroke, but the consultant who saw me afterwards said I had definite problems in my left side. He said it could be MS, though the pattern didn't fit. The other possibility is that something is pressing on my spinal cord or brain stem. The whole one sided numbness didn't fit with a simple pinched nerve. He booked me in for a head and neck scan for the end of this month and I'm pretty scared.

I have two prolapsed discs in my neck, and one could be moving against my spinal cord but they need to see more imaging. That's rather terrifying, as its common knowledge that anything damaging the cord is definitely something you do not want. Currently, if I turn my head after sitting still for a few moments, I hear a loud crack, grinding and popping in my chest and ribs. Then my hand and foot goes numb, and sometimes my face. A new doctor I saw recently said that sounded a lot like neck instability, especially as it comes and goes with movement. They also noted how hypermobile my finger joints were. I explained that every joint in my body is like that, and that they often cause intense pain.

I'm freaking out because for the past 3-4 years I've been begging my doctors to take my hypermobility seriously as this is a huge culprit for spinal instability and disc degeneration. I have almost all the symptoms of hypermobile Ehlers Danlos syndrome, but they refused to look into it. I've turned up to the doctors with crushing pain in my left arm and leg, and the most horrific migraines for a whole year only to be told I was anxious. Even when I told them my aunt who was hypermobile ended up fully paralysed from cervical instability, they told me I probably just had a stiff shoulder...Now that it has turned to loss of sensation, they finally decide just maybe I might need help. The solutions for cervical spinal cord compression are not easy ones. Its usually risky fusion surgery with a permanent reduction in motion and your life is never the same.

Had they just taken me seriously when this was only pain, I would have been referred to a physiotherapist who specialised in hypermobile people, and would very likely have slowed further damage to my spine. Instead I was given exercises to stretch my neck, to "loosen it up" even though it can turn like an owl, and my whole problem is that my neck is always too floppy and loose to begin with.

Because of my hypermobility, there's a good chance any damage will "hide" on the MRI I'm getting because I will be lying down and my joints will settle. This is common knowledge among people with spinal instability caused by hypermobility, not just me guessing at things. I will need an upright MRI where I'm flexing my neck to show if something is moving out of place and pressing on my cord or brain stem. Trying to get referred for that is like winning the lotto.

I just have this mixture of fear and anger that I can't let out. I'm trying to be really calm around my loved ones, but inside I'm falling apart. I'm scared that I could suddenly lose more function in my left side, and I'm angry it took so long for my doctors to listen.