Hi all. This is going to be long, so I apologise in advance.
I grew up thinking I "just" had eczema and asthma.
12 years ago at the end of March, at age 26, I went for an MRI scan because of nerve pain in my arms. Another MRI and CT Scan later, they found I'd been born with a Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome. They operated the next day, removing bone.
Fast forward to a year ago tomorrow, I'd taken my two dogs for a walk, come back, and was browsing the internet on my tablet, when I suddenly felt unwell. When I went to get up and walk, I felt unsteady on my feet, and steadied myself by placing my hands on the wall.
Mum took me to A&E, who were dismissive, and I get the distinct impression thought I was drunk. I'm not a big drinker, and by that point, had probably not had a drink since Christmas (and
even that was a low alcohol drink). My brother took my dogs to his to take care of them for me.
Next day, still feeling no better, and unable to steady myself to even take a single step, I phoned my GP. "Give it 48 hours, and if no better, ring back."
48hrs later, I phoned them back and got a telephone consultation, which led to a face-to-face appointment so she could see for herself what the problem was. She said my legs were weaker than they should be for a woman of my age, and sent me for an emergency appointment with a neurologist.
Neurologist was dismissive too, and said it was "psychological FND", but that to "reassure" me, she'd send me for MRI and blood tests and physio. If that didn't work, I'd be referred to a psychiatrist. I complained. Her secretary (and the neurologist) say I have a problem with the word "functional" and it seems, passed that information on the my physiotherapist, because he seemed to think I had a problem with the word, too. I don't. There's obviously something
functionally wrong. I just have a problem with a neurologist diagnosing me with a psychological condition before she'd even conducted any tests. She sent me for a scan of my lower back. Apparently, there was nothing there that could explain my symptoms.
I responded by requesting a copy of my scans, which revealed (in addition to the 3 conditions I already knew about):
- My neck is straighter than it should be. According to Google, this is known as "Text Neck". In my case, it's probably been caused by reading actual books and years of staring at the ground as I walked.
- 4 bulging discs, 3 of which are in my neck.
- Narrowing of the neuroforamina.
- There's a split in the cord.
- Spina Bifida Occulta - and I'm guessing it's that which is tethering my cord.
I was referred back to my neurosurgeon at a different hospital to the one in which I'd seen my neurologist.
In the meantime, my physiotherapist left, and handed me over to his boss, a Level 5 physio. On a hunch, she tested the strength of my legs by asking me to lie down and raise one foot, then the other, hold for 5 seconds, and then release. They felt like ton weights - especially my right leg, which is often the worst.
My neurosurgeon (now a spinal consultant) sent me for a whole spine x-ray, and I saw him in clinic on Friday. He's going to send for my MRI images, because the other hospital hadn't sent them over, apparently. I wish I could say I was surprised, but somewhere between the two hospitals, my referral itself got lost, something I didn't know until I chased it up.
He asked me for my history and asked me to stand and walk without the walking stick I've been using since the summer. I managed two steps, and both feet glued themselves to the floor (this is the main problem I have - it happens with or without my walking aids, and it's completely random - sometimes I can walk reasonably well for about 5mins, and then the strength in my legs just go, and I can't physically put one foot in front of the other). He asked me to take just a couple more steps - I told him I couldn't. It took another minute or so before I could move my legs at all. They were still stuck to the ground, but I managed to turn first one foot, and then the other and head to the nearest chair.
He's sending me for nerve conduction test.
Symptoms:
- My feet become glued to the ground. This can be just one foot, or both.
- My lower legs can feel like there's a ball and chain around my ankles.
- My knees suddenly give, and I feel like I'm sinking to the ground. I don't just fall like a stone, but it's like I can feel gravity pulling me down. I can stand for, at most, 3 minutes at a time.
- Balance problems. This seems to be worse in the house, where I'm stumbling from the wall to the baby gate across mu kitchen door (my lurcher is a counter surfer).
All of this is playing with my mind, and yesterday, I was in crisis, which is why I signed up. Every time I have a good day, every time I can walk across the room unaided, every time I sit and my legs feel normal, every time I manage to walk along the street I start thinking "is the neurologist right? Is this all in my head?" Then I think of those images, and what the (second) physiotherapist noticed, and all the times I've been going about my day and my legs have suddenly become uncooperative.
I feel like I'm losing my mind, like I'm going crazy and don't know what's real and what isn't anymore.
I don't know why I'm posting this, what I hope to achieve, apart from getting it off my chest, but writing it has been cathartic.
Thanks for reading. I applaud anyone who makes it this far.
