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My MS Arrival

@SammyC
My MS Arrival

Everyone that knows me knows that from an early age I was always doing sports. At 7 years  old I did Judo until I was 12. At secondary school I was good at athletics, long distance  running, netball, dance and anything that was physical. I then started working in London  when I was 17, and I would get up at 05.30 to travel to London from Kent to be at work by  07.00, so that I could be at the gym before I started work at 09:00. I would then go to the  gym at lunchtime or to my gym at home after work. 

My MS Arrival: 

I was involved in a road accident on the motorway in June 2000. I was driving back from work  and always remember as it was a really warm and sunny day but the traffic started stopping  due to a motorbike spinning off onto our lanes. I stopped, as did the other cars in front of me, also the lorry on the left hand side, unfortunately, the man in the white van behind me didn’t see that all the vehicles in front of him were stopping and because of this he smashed  into the back of my car! This was quite a force smashing into my vehicle that was stationery. The motorway came to a standstill until the fire brigade and the police arrived to help everyone. My car was smashed quite badly and I was made to go to the hospital. 

After the accident I had to go and see a neurologist as I started having trouble with my neck  and back. We will never know to this day if this accident is what caused my MS or if I already  had MS and the accident triggered the MS off. 

As explained above I did a lot of exercise from an early age. Anyone that knows Judo will be  aware that you get slammed down on the mat quite a lot of times but I enjoyed this sport. I  stopped this sport once I decided I wanted to do other exercises. 

Then in 2001 I started getting severe headaches and loss of vision in my right eye. 

I then went to an eye hospital to have my eyes checked and they were worried as I was told I  had inflammation of the optic nerve in my right eye. 

I feel I was lucky, as where I worked in London, I had private healthcare and the doctors booked  me in for a head scan promptly. The reason I say I was lucky is because people I have spoken to  about my MS tale told me that it can take ages for a diagnosis of this condition. 

Also, I was quite naïve when I went for the MRI head scan as I thought this was for my eyes to  be checked. Then 2-3 weeks later the consultant called me at home and said “I have good  news you do not have a brain tumour” I didn’t realise the consultant thought that it could be a  tumour in my head as I thought they were looking at the trouble in my eyes. I then had to go  back and see the neurologist who I saw after the motorway accident to discuss the findings of  my head scan, and I was told I had fluid on the brain.  

I then had to go into hospital to have a lumbar puncture and prior to this procedure I hadn’t  come on my period but I had done a few tests and all read negative.  

A week before collecting my lumbar puncture results, I found out at the doctors I was 3  months pregnant. I then went to see my neurologist for my results to find out that I had MS  too. I didn’t know anything about MS and as you can imagine all of this news in 1 week was  shockingly scary.

It was my family and friends that were really upset, especially my dad as he couldn’t help with  this. But I kept telling them all I am positive and I will keep fighting this for as long as I can,  which I am. When everyone kept getting upset, I said to them I’m here, I’m alive and some  people have to tell their loved ones I only have 3 weeks to live. 

I didn’t know much about MS apart from someone I worked with in London, her mother-in-law  had this. 

In the first magazine I picked up when I found out I was pregnant there was an article about  someone who had MS and after her birth she lost all the feeling in her legs. I was then feeling  worried but when I discussed this with my neurologist, he told me it was a small percentage of people this happened to. 

When my neurologist diagnosed me with MS, he advised me not to go to any groups as he  thought being only 27 it can be quite depressing, so this is why I have never joined a group. 

My MS during pregnancy was fine, everyone thought I looked great. 

I had my daughter Grace in 2003. The delivery wasn’t great but that can be normal with labours. The labour was 48 hours but Grace was a great baby, she didn’t cry much and wasn’t a greedy milk baby. 

When Grace was 5 months, I felt good enough to go back to work part time in London. 

When I was at work there were a few times that I noticed I was getting weaker in different  places of my body, but when I was pregnant with Grace, I was encouraged to start Pilates as  this would help me, which it did. I then carried this on after my pregnancy. 

2004 was not a brilliant year, but I was then told after having another smear test, the abnormal cells had returned and they were concerned as the pre-cancer cells were at stage3 and needed to be removed immediately. I then had a section of my cervix removed, abnormal smears had been normal for me as I had these appear on numerous occasions but this time I had laser and freezing treatment to remove them, they had got worse. 

Also, in 2004 I was diagnosed with endometriosis and had to go into hospital and have this  lasered away from my fallopian tube. Doctors made me aware that this could be another  difficulty if wanting another child. 

For me to help stop the endometriosis I needed to stop my periods and the pill never worked  for me. Whilst my MS was behaving, we decided to try for another baby, in case my condition  started getting worse. 

The boss who I worked for since I was 17, I started a new company with him and a few others in  1998, he decided to retire in 2005. I thought this was a good time to leave London too and take a break and concentrate on my health. I then found out I was pregnant in the autumn of 2005 which the doctors were surprised with but were happy for me as they didn’t think  this would happen. 

As soon as my son was born my doctor suggested the coil be fitted which has worked as the  endometriosis has never returned. My son George decided he didn’t want to come out, (we call him the lazy baby). I had to be induced. The contractions started at 6pm and he was out by 10pm, labour wasn’t as bad as his sisters. 

With both of my pregnancies I didn’t take any drugs during labour, which I think helped me  afterwards. 

The neurologist who diagnosed my MS unfortunately passed away in 2010. Prior to this happening, I had seen him to discuss the loss of the feeling in my mouth, which I only realised because my mouth blistered. Then the loss of feeling on my left side of my body which I only noticed when I accidentally touched a pan that had just been taken out of the oven, but only realised afterward.

I then had to see another neurologist who wasn’t the best.  

2013 

In 2013 my boss started another company up in London and wanted me to work with him  again. The day I started there; spasm attacks began in my left arm, hand & leg which was a  new relapse and quite embarrassing. Obviously, in the streets of London it's very busy so if the attacks happened, I would move to the side so I wasn’t in the way of anyone. I couldn’t answer the phone when the spasms were happening in my hand so they set up my phone so I could listen and speak with headphones etc. My shorthand was hard to do, so I had to try and remember quite a lot and type things as soon as the spasm finished. 

I went to speak to my GP about this symptom and I collapsed in the surgery because I couldn’t  keep myself up whilst walking to the doctor’s room. When we moved house, the new doctors  didn’t seem to know too much about MS. I travelled to London on a coach and I also collapsed  when I got off the coach which was horrible but my partner was there to help me. This relapse  

lasted for 3 months as I started the new job in early January, but it stopped on my birthday in  March which was the best birthday present. My neurologist thought the relapse could have been triggered by starting the new job, which gave me a fear that doing new things would trigger a relapse again, but to this day, the spasm attacks have not come back. 

When I met the new neurologist for the first time, I explained some of the weaknesses that  were happening and she gave me some tablets to try but she told me that because I was so  relaxed and happy, she would remove me from her patient list, and if I was having any  problems, I was to email her. When I started having these spasm attacks, I sent an email and  received a reply from her secretary saying only contact me if you have an emergency. This  made me worry about if another relapse occurred and how would the neurologist know. 

At this time I decided to stop taking the tablets the neurologist prescribed, as I wasn’t sure if  these were causing the spasm attacks.  

My GP managed to find an MS nurse who came to my house for a home visit whilst a relapse  was happening. She was able to help me so much, we discussed the numbness on my left side, I was unable to pick my leg up off the ground and realised another relapse was happening. I had quite a bad relapse and my nurse spoke to the GP and discussed taking a steroid drug to help with this as I wasn’t able to go to work. 

2014 

I then met a new neurologist; at this time my MS was diagnosed as ‘Relapsing Remitting’ and we  discussed a treatment which hopefully would help me; Rebif injections. I was quite nervous about doing these but the Rebif nurse came round to my house and showed me how to do them. I had a printed body picture to help know where on my body I had injected as you couldn’t inject in the same place regularly, you had to work around your body. The  injections were to help relapses and manage my significant fatigue, headaches and balance  control. Unfortunately, the Rebif injections were not working as they were bruising me quite badly and the neurologist took me off them. I then started a new drug Copaxone

2015 

Due to the Rebif injections not working and medication changing to Copaxone, I then had to change to Tecfidera and I had to change my neurologist again.

2016 

I started having trouble with my bladder, UTI’s were happening too many times. I went to see a consultant in the Urology department to see why this kept happening and the outcome was due to the loss of feeling around the urethra which was why I wasn’t emptying my bladder. I then had to start using a self-catheter. This was a shock to start wit,h but this helped stop the UTI’s. This has now become part of my life. 

2017 

MRI head scan, no lesions which was good. 

2018 

MRI head scan, more lesions had appeared which is why the relapses made sense. 

2019 

My MS is now classed as Secondary Progressive. I went to see my neurologist as relapses started happening again and my Tecfidera wasn’t working, so together we looked at different drugs available. Mavenclad seemed to be  the best option. The first year of taking this drug was really good, I’ve had no new relapses but  old symptoms can still come back with this drug. I was prepared for these old symptoms to appear and with me, they happened immediately but only lasted 6 weeks. 

2020 

Throughout August & September I had an MRI head scan and no more lesions appeared. I then had all the other tests ready for the last dose of Mavenclad but the only problem was my low blood count. They wouldn’t allow me to have the last dose until it had got to at least 0.7 and mine was 0.3 – 0.5. 

At last, at the end of October my bloods went up to 0.8 and King’s Hospital allowed me to have the next and last Mavenclad tablets. They were sent to me in November and I started taking them in December. They were finished at the very end of December.

I was really happy to be able to take the last lot of Mavenclad as the first ones I took in 2019  worked brilliantly. At the beginning of January, when I had my bloods taken it was really low which can be normal with this drug. But I kept having lots of other symptoms and old relapses which weakened me lots. 

I started keeping a diary when I started taking Mavenclad in November/December 2020, as  too many things kept happening and I thought it best to monitor these. Then I could remember them when I spoke to my nurse. I’m not sure if all this happened because of the pandemic and I had to be very careful.  

2021 

I had my first vaccine which I thought would protect me too, but I’m not going to lie, I was worried due to the Mavenclad floating around inside my body. 

After my MS made me a lot weaker and I started feeling nervous about driving, I decided to  leave my job which is a 30-minute drive on a good day, my nurse thought with the dizzy  symptoms I had been having I needed to be careful. When I spoke to her about helping other  MSers, she thought this would be a good idea, knowing I was diagnosed in my 20’s and I am  always positive.

About the author

@SammyC

Hi, my name is Sam. I was diagnosed with MS nearly 20 years ago. I have 2 children and this year I decided to take a step back from work to concentrate on myself and my family. As I have more time now, my nurse thought this would be a good chance to join Shift.ms and share my MS story with others.