It took at least five years until I received a diagnosis, which is ataxia with an unknown cause.
My diagnosis process was incredibly slow, difficult and horrendous. I was passed from specialist to specialist. The doctors did not seem to believe me at all. It was very humiliating and frustrating. The worst expertise was seeing a neurologist privately. I thought I would be taken seriously but was left humiliated, demoralised and hopeless.
I took an overdose as I felt like I couldn’t carry on. I had seen orthopaedics, ENT, had MRI scans and psychiatrists.
A year ago, I saw another neurologist who examined me thoroughly, did another brain MRI, lots of blood tests – some of which were genetic tests, I think. He told me he was sure I had an ataxia. The results came back as no known cause. I was told that in the future they may find more answers.
My initial symptoms were pins and needles, nerve sensations throughout the body, pain, and strong muscle spasms. My right foot muscles / nerves felt like my shoes were two sizes too tight and my socks feel tight. It is an awful feeling. I used to say my foot was numb, but it’s more like a constricted sensation, which now has spread up to my knee.
All other symptoms began three or four years ago. I began to lose my balance and drag my right foot. I often tip sideways walking through a doorway; trip over my feet, and not sense where my feet are positioned on the ground – misjudging the pavement and kerb. I lost the ability to walk in a straight and upright, and to walk down a straight line with one foot in front of another. In the dark I sway and lose balance completely.
I developed swallowing difficulties, which feel as if I have food sticking in my throat even though I do not. More recently I have visible nerve twitches in my hands and feet, and an inability to sense when I need to use the toilet. My back muscles go incredibly rigid and the painful I can’t even describe It. I often have brain fog and slight memory problems. But I’m unsure if that is ataxia, my age, medications, or all three.
The only helpful doctor I saw was the last neurologist I was sent to. He was very nice to me; most of all he believed me. I had become so used to being dismissed as crazy or making it all up.
Recently, I saw a GP who said nothing can be done for me now, so once again I feel very dismissed, as if I should not ever mention my problems to them ever again.
I didn’t receive much support after my diagnosis. A few sessions with a physio and a nice lady from a local charity was asked to help me find more to be involved with. I attended a local craft / social group available for all people finding mixing difficult. I went a few times and then the lockdown happened. I don’t feel I will ever go back now.
I am certain that If I’d seen an understanding neurologist much sooner, and been referred with a full accurate medical history, I’d have been taken seriously. I wish I had kept a symptom diary, because every doctor would ask when certain symptoms began and as time passed, I would often forget.
I think being referred to a multidisciplinary team sooner would have been a big help. Finally, I wish more medical professionals were aware of ataxia.