Jess Newby, 25, from South Tyneside, has spoken about living with Multiple Sclerosis, a chronic auto-immune condition she was diagnosed with this year after losing all feeling in her legs during an attack. She believes she first experienced an attack while studying music in Manchester several years ago, when a severe migraine left her functionally blind for a week.
This year, what began as an odd sensation in her feet and legs led to seizures and frequent falls. MS is a condition that commonly relapses and remits. Jess has developed lesions in her brain and one on her spine. She is fundraising to pay for driving lessons and a specialist mattress to manage pain and regain independence.
Fears rooted in childhood
Jess said MS has always been a frightening prospect for her, as she watched her father, Mark Newby, suffer with an extreme case of the illness when she was a child. While MS is not passed on genetically, it is thought there is a genetic link to being at higher risk.
She told ChronicleLive: "MS was, while I was growing up, always a really scary thing for me. I had seen my dad go through it. He was bed-bound and very poorly. As that was the only experience I had, I had the idea that all cases were so extreme. It did traumatise me - but being diagnosed myself I now know it's not always as extreme."
Path to diagnosis
Jess described how the condition started during her time at university in Manchester, where she ended up in hospital with a migraine so severe she went fully blind for a week. The hospital there did not perform an MRI scan. She later left university and returned to the North East.
She added: "I came back home but I was still experiencing migraines, some seizures. They did an ECG, EEG - but nothing." This year, she began to experience numbness and "pins and needles" in her legs, which spread and affected her balance.
Initially told she would be treated as an outpatient, Jess chose to go to Sunderland Royal Hospital the next day as symptoms worsened. She said: "To be honest, if I had been treated as an outpatient, I still don't think I would know the diagnosis now! The next day I decided to go to Sunderland Royal. Symptoms were getting worse. I was falling over even. I went to Sunderland hospital and they decided they were neurological symptoms - and they wanted to keep me in."
After tests including an MRI and a lumbar puncture, she was diagnosed with MS. She described living with the condition: "With MS, there's only so much you can recover. I think of it like a spiral staircase - you get knocked down five stairs, and then you get up but the top stairs have disappeared and you can only get back up so far. I am constantly tired. I get headaches and really I'm 25 but living like I'm 65. I've a great support network - my mam, there's Jim who I call my adopted dad really and he's been a lifesaver."
Fundraising for independence
Jess is fundraising to afford driving lessons, which she said would give her part of her life back. On her crowdfunding page, she said her condition remained "terrifying" and that she is now an ambulatory wheelchair user. She noted the cost of lessons at £84 each, plus other private treatments not offered by the NHS.
Her crowdfunding page is available online, and ChronicleLive has set up a dedicated WhatsApp community and a free daily newsletter for updates on this and other stories.
