My Story

Diagnosis

I, Lucy Lintott was diagnosed with the incurable terminal illness known as Motor Neuron Disease (MND).

I’d known for a while that something wasn’t right, as I started losing strength in my left hand, and then my balance and co-ordination started to deteriorate. I was walking into things and falling over easily and more often. I knew I needed to see the doctor, but I was also aware that if I was diagnosed with anything before going to work in America for the summer, that my chances of being able to go would be minimised.

After coming home from America, I realised that I was having difficulty opening my left hand for long periods of time, walking on my toes on my left foot instead of using my whole foot, my muscles would vibrate viciously when I was seated or standing, I started to just fall over randomly even when I was on flat ground, my bladder functions were becoming urgent and my walk was becoming slow and stubbling.

In September of 2013 I finally plucked up the courage to go and see my local GP in Glasgow. After being referred to a neurologist, I realised this was a lot more serious than I first anticipated.

So I visited the neurologist on Tuesday 12th November, Dr Webb, with my mother. Dr Webb went over my symptoms from head to toe before he finally asked my mother about my speech. At this point everything seemed to become a reality and I broke down crying, realising the condition had taken over my speech – people who know me well will know that I’m well known for always talking! Dr Webb then asked if he could examine me with the help of a student doctor. He looked at each limb and studied the twitches that occurred while I completed various tasks and checking my reflexes. Finally he examined my hand, pointing out to the student doctor the “muscle wasting”. Throughout the examination I smiled to hide my nerves, as something told me he already knew what it was. I remember asking if he had any idea of what it could be and he replied that he had a few ideas, but needed to eliminate a few before he could be sure. I probed further, “Is everything on your list treatable?” because although I was scared of the answer, I needed to know so I could get back to being me! He replied, “Lets wait and see”. This did not reassure me! The final stage of testing involved blood tests, which took ages because they couldn’t find a vein.

That night I went back to the flat and typed in muscle wasting to my internet browser to see if I could find a link to any illnesses with similar symptoms to mine. I came up empty, which I was quite relieved about, as all of them seemed serious and would required medication for the rest of my life!

The next day I received a voicemail from the doctor to tell me that he was making a bed available in a ward and I was to call him back as soon as possible. I listened to the recording several times to make sure it was true, I had never been so scared in my life and broke down crying! My mother was packing the car to head back home from visiting me and I caught her in the corridor. Still crying, I played her the voicemail. She told me that it was a good thing and that I’d know sooner rather than later. I remember saying that I didn’t want to go to hospital before bursting into tears again. I tried to calm myself down by concentrating on my breathing, but it took me a while. I said goodbye to her with a brave face even though I didn’t want her to leave. After mum left I found myself crying on the sofa again because I felt so alone and didn’t want to be ill. After I finally sorted myself out emotionally, I phoned the doctor back and he told me he’d admit me into hospital that Friday.

My mother ‘Facetimed’ me that night after she’d told my Dad. She told me that it was time to tell my siblings, Ross and Laura, as during my many trips to the doctors, I had made Mum and Dad promise not to let on to them, as I didn’t want them to spend months worrying about nothing. When I was around them I would try to hide my symptoms just so that they wouldn’t suspect anything. I remember ‘Facetiming’ my sister straight away to tell her that I had to go into hospital for tests, but that I would be fine and not to worry. Ross was working so I told him to get back to me once he was home. When he eventually got back to me and I told him my news, he tried to tell me everything was going to be okay, but I could tell he was just trying to convince himself as well as me. It was a complete shock to my brother, as he didn’t know anything was going on…he was completely clueless while my sister knew at least that I’d visited the doctors.

After revealing my news I went into my flatmate Louise’s room and started to cry, telling her what had happened and how scared I was and how it was all happening so fast. We’d decided we’d go out that night to take my mind of it. It worked for a few hours, but when I woke up the next day I was still as upset as the day before.

On Friday 15th November I was admitted into Ward 56 – Acute Stroke Ward, in Glasgow Southern General hospital. I started to freak out so I called my mum saying that I was in an acute stroke ward. Mum and I had discussed what the possibilities of the diagnoses could be – a stroke had been one of them, the others were a brain tumour and Multiple Sclerosis. The silver lining was that, luckily, I had my own room! I just sat on my bed looking out my window, watching the cars coming and going from the hospital, envious of those leaving, I just wished I were at college.

Soon after I was admitted to my room a new doctor came in and introduced himself as Dr John. After the introductions were over we got down to the questions detailing the exact information relevant to my symptoms as I did with Dr Webb. He asked about my family tree and kept asking about any illnesses that were present amongst my relatives. I was surprised how much I knew about my extended family, as my mum’s side is rather big! He asked me when I had started to see the symptoms of the weakness in my left hand, as it was my initial symptom. Then he examined me, doing the same tests as Dr Webb had done earlier that week. He mentioned the tests I required including a neck, head and spine MRI, electrolysis, lumbar puncture, as well as more blood tests! He then informed me that more specialists would be in later to get their take on the possible causes of my symptoms.

Ten minutes later I finally pulled out my laptop and watched ‘The Big Bang Theory’ to take my mind of the situation. A young nurse came in to get a formed filled out with my details and to give me a hospital band, looking down at it they hadn’t changed since I was a little baby as I remember finding mine in an envelope in my file in the house. Looking at the band I realised I couldn’t hide my illness anymore. I felt relaxed for thefirst time in months, no longer did I have to hide my hands, walk or twitches in public as I was finally doing something about it. I no longer felt ashamed with the way I walked because I’d soon have it sorted.

A physiotherapist came in to introduce herself and examined me. I had to show her how I handled stairs, as I mentioned I found them difficult. She picked up on the fact I couldn’t put my left heel to the ground and as a result I was walking on the ball of my feet. She tried to offer me a walking aid, but I was being stubborn and explained that I could still get around by myself and I wanted to keep it like that for long as possible!

After I finished lunch a man came to take my blood, which was difficult yet again! In the middle of him filling up the tubes, Dr John came in and said he had hoped that I’d of had some tests done today, but that he hadn’t managed to fit me in. He told me that an Occupational Therapist would be in to see me then I could go home. The Occupational Therapist introduced herself and talked briefly before saying she’d be back on Monday to see me, as I’d probably had along day and would be fed up off people constantly asking me questions. It didn’t bother me that people were in and out of my room, as soon I’d know what was causing me so many problems.

On Monday 18th November, I had to be at the ward at 10am and my Dads train didn’t get into Glasgow until 11am, so he had to make his way across town to the hospital on his own. I’d been in for 5 minutes when a porter came to take me for my MRI scan. I was a little flustered when he came to take me down, as I didn’t think it would be this soon, so I told Dr John that my Dad was on his way and asked if could let him know where I had gone when he arrived. For an MRI you get undressed down to your underwear, take off all metal items and put on a hospital gown. Being in the MRI machine is a strange experience. Time goes by so slowly with weird drilling noises. It’s a small enclosed space where the only light that gets in coming from the end of the bed. It was also really hard for me to stay still for the hour and half it took to complete. I remember lying down in the MRI, totally oblivious to what was going on around me and trying to plan what I was going to get my sister for her birthday.

After the MRI I had the lumbar puncture. This was the test that I had stupidly looked at on the Internet, so I already knew roughly what was going to happen. For this I had to be in child’s pose, lying on my hospital bed. He told me what was going to happen in advance stage by stage. He put in the local anesthetic first, which was just like having blood taken. Once we established I couldn’t feel anything, the final needle went in. I started to suck my thumb as it comforted me! It’s weird getting a lumbar puncture as you know people are behind you taking spinal fluid but you cant feel anything. After he left, a Speech and Language Therapist came in to get me to do some oral exercises and asked questions about my breathing, chewing, swallowing and speech.

Later that day I was taken away for electrolysis. I was surprised that I was getting all 3 tests in the same day, but I was just glad that I wasn’t waiting around. Electrolysis is on of the worst experiences I’ve had during my MND. I got changed into a hospital gown for the second time and laid in what looked a bit like a dentist chair without the arms. The doctor briefly explained what was going to happen and just got to it. He put 3 electric pads on my right hand then used a device to send electric pulses down my nerves. It started of gradually then the currents got stronger and stronger. I was feeling scared so started to suck my thumb again and just watched to see when he was going to shock me again to give myself some warning. He did this to several parts of my body before moving on to the next part. He placed needles in certain muscles around my body and in some parts wiggles them around to the right part. Once the needle was in the correct place I had to tense my muscle, which in some parts is painful. Near the end he could tell I wanted to cry as I was finding this uncomfortable and painful, so he asked a nurse to come in to comfort me. He finally finished and I went straight to get changed. I just wanted to be out of that room! Back in my hospital room Dr John said I could go home and to come back in tomorrow for the same time.

I came back in the next day. Dad and I were in my room talking when Dr Webb, Dr John and a male nurse came in. They told me they had all the results back, I started to smile because I was finally going to know what was going on with me. And that’s when Dr Webb said I had Motor Neurone Disease. All three of them where looking at me, Dr John raised his hands to his face, but I was still smiling, thinking “I’ve heard of it, but I have no idea what it is”. Then I realised that my Dad had burst out crying and I remember thinking “Is he going to tell me what it is or not?” The first thing he said was that there was no cure at this time, and I just burst into tears. I knew then he had finally answered my question from the week before and I was grateful. He went onto the finer detail. Once he’d finished telling me, we spoke briefly about what was going to happen. Dad mentioned that I should give up college. I was shocked and refused quickly, I’d finally found my feet in Glasgow and he wanted me to move home! Dr Webb said he’d arrange a meeting with the MND specialist, Dr Gorgy and advised that I get the rest of the family down if possible. I told him I wanted to go home now and he said that it was fine, as long as I was back in for tomorrow. But he didn’t understand I wanted to go home to my parent’s, not just back to my flat. I just wanted to go to my bed and be alone, but when I remembered Dr John face, along with my father’s, I knew hiding away wasn’t an option!

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