At 22 I was diagnosed with Multiple Sclerosis. Looking back there were signs from well before that. It started with kicking myself when I walked, creating scuff marks down the sides of each shoe. I couldn’t balance in heals, when previously, I could run for a bus in six inches!
Then I couldn’t walk in a straight line in flat shoes. I couldn’t understand but just dealt with it by taking my new- born son everywhere with me so I could steady myself with his pram. I already had a 3 year old, and my baby was just four months. A couple of weeks later, one of my legs went numb. I used it as a party trick for a while, still not taking things seriously. My friends asked me if I had been to the doctors, and that is honestly the first time it occurred to me that I need to be checked out.
I was examined at the hospital, checking my reflexes and capabilities. The spine specialist said that this problem has nothing to do with the spinal surgery, but I was sceptical. By now I felt foolish. Why had I let this go on for so long and I’m only here now? I was admitted. Over the next 9 days I was prodded and poked. I was sent for x-rays, but nothing showed up, explaining the numbness in my legs. I was reassured that I will be sent for an MRI scan which will show my body in slices and any issue will be seen, the results will be back in the morning. The next day when the doctor entered my room I prepared myself for what he might say.
There were a few suggestions being thrown around, 1 an infection in the spine, 2. a cyst on the spine or 3. a tumour. As I waited with baited breath, he simply looked at me and told me the MRI was a waste of time as you cannot scan metal!! It was because of the metal they sent me for an MRI. I think this is when I started to lose my mind. The doctor wanted to do what he called a simple procedure of putting dye in my brain to see if it managed to make its way down to the base of my spine to check for blockages. This scared me. First, they put metal down my spine and now I can’t feel my legs, now they wanted to put shit in my brain.
I refused the procedure, so the doctors sent me home.
I was still walking round with numb legs and my brain was trying to come to terms with possible outcomes. If I had an infection, I would be treated with strong anti-biotics, a cyst would require surgery and a tumour could burst and kill me at any time, but as I refused the dye in my brain- go home and see what happens. This caused me psychological problems which were not realised at the time.
Over time my right- side and arm went numb. Then half of my head went numb. I could feel half of my mouth when cleaning my teeth, but not the other. I felt so strange. I didn’t know what to do. I realised later that I was living like I was about to die. I didn’t go shopping, only buying what I needed for the day, thinking that if I dropped dead, I’d be better off with money in the house that food in the cupboard. I gradually got worse, but the psychological effects of waiting for death wasn’t helping.
Next, I woke up in accident and emergency, not knowing what I was doing there or how I got there. My sisters were there already so I must have been there for a while already. When I came round my body wouldn’t stop shaking, spasming, violently. These episodes would calm down but seemed to return when I tried to speak to find out what was going on. My sisters repeatedly told my to stay calm but it wasn’t easy. I was admitted again. This time I was sent for an MRI on my brain.
An old school friend called me after hearing I was in hospital, asking how I was. My sister took the phone from me as talking was setting of my spasms. She explained to me friend what had been happening. By now I had convinced myself I had a syndrome that was so rare they would name it after me! She said she would come and see me the next day. I had not seen a doctor on the ward yet, as my mate walked in. She told me she had put my symptoms in Google and it seemed like I had M.S.
The shaking/spasming stopped. The doctors had told my sisters in A&E that they thought the spasming was psychological, but it didn’t seem likely. It was true. Now I had some kind of explanation about my condition, it calmed my mind.
2 days later my MRI results were back. It showed signs of Multiple Sclerosis. (Cheers, but my friend already told me!)
Incurable neurological disease. Brilliant.
I was to have intravenous steroids for 3 days. A nurse came and connected me to a drip. It made my mouth taste of metal. I had to eat sweets at the same time to mask the taste. After the first lot of steroids I asked my sister to take me for a cig. She pulled the wheelchair up to the bed. I swung my legs round and placed my feet on the floor and screamed. The floor was cold. I could feel it! Over the next couple of days, it felt like I was waking up. Like there had been a dark cloud in my head and it was finally clearing, although there was a long way to go yet. I was sent to see an M.S specialist. I have no idea what she said. I left the room with a post it note that housed 2 words. Polyunsaturated fats. I didn’t know what that was supposed to mean to me. Was I to avoid polyunsaturated fats or seek them out?
I was discharged from hospital after 11 days of not seeing my own consultant, only seeing his ??? As my sister and I walked down the corridor, I passed a man I recognised. I said “That’s my doctor” to my sister. She stopped the man and asked him if he was my doctor. She told him I had been in hospital for 11 days and was yet to see him. She told him I had been diagnosed with M.S. He ushered us to the side of the corridor to ask me how I felt. I told him I felt distorted, like I was drunk, he told me that is not how I feel. I was mortified. My sister explained to the doctor that we had just seen the M.S specialist, who stated that I must not be in stressful situations as it may trigger me, so she removed me from my doctor.
I went home.
This was day one.