It all started a few months after my 18th birthday in 2001 when I woke up one morning with tingly feet.
It was only mild, and thinking that it was because my socks were too tight (as you do), I carried on as normal and headed off to college. It was when I was walking from the bus stop that I realised the tingling was getting worse, and starting to spread up my legs. I told my Mum when I got home and, obviously concerned, she phoned my doctor who checked me over.
It's at this point, when my memory gets a little hazy because it all happened so quickly (plus it was quite a while ago!). I know that within a couple of days I had been admitted to hospital as the tingly turned to numbness and my legs stiffened up, making it hard for me to walk. I also remember the word 'stress' being bandied around a lot. In fairness, my parents had just split up, and I was about to sit my A Levels, so I can see why they might have jumped to that conclusion...and perhaps the stress caused things to finally come to a head.
However, I was taken to see a great consultant called Dr Sharrack, who did an MRI and assessment and concluded that it could be Guillan-Barre syndrome, but my Mum, who used to be a nurse suspected tell he was being a bit sketchy about things. Without her I probably wouldn't have been diagnosed when I was. Super Mum! After our appointment, she went straight back into his office and asked him to be honest with her. He confessed that he suspected that it was Multiple Sclerosis.
I had a lumbar puncture when I returned to my hospital, and it confirmed the worst. However, it meant I got a swift diagnosis and I received a lot of good support and care.
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For the next 6 years I had at least one major relapse a year, all featuring the same set of symptoms.
I've had ups, downs, been a human pin cushion as I gave the interferon drugs Rebif, Copaxone, and Avonex a try, and completed a drugs trial. I had a break from medication after they admitted it wasn't really having any positive effect and switched to a low-saturated fat diet to aid certain symptoms and had a decent period of remission for 4 years. Since then I've tried Tecfidera (didn't stop relapses) and now Tsybri which has been brilliant!! I go for an infusion every 5 weeks, and my quality of life has been great. Sure there are ups and downs but since being on it (from 2016) I haven't had a major relapse!
My symptoms have varied more over the last 10 years (pregnancy probably playing a part in that) and the last relapse I had caused damage in the cerebellum causing loss of feeling in the right side of my face, slurred speech, trouble swallowing and trouble with speech and concentration. Alongside these new symptoms that creep in when I'm tired or stressed, generally if I'm having a bad day or week, I tend to suffer from extreme fatigue, tingling and numbness in my legs, face and hands, stiffness, balance issues and neuropathic pain. I have also suffered from depression, on and off, over the last 20 years.
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I try to be positive and not much phases me now, and I was going to write a paragraph about how I'm grateful because it could be something worse..yah dah yah dah.... but you know what? Having MS is royally sh*t! I am ridiculously lucky though in that I have a loving, caring, frankly fantastic husband and amazing friends and family, who always get me through the challenging times.
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