A Curly Hair, Chronic Illness & Lifestyle Blog - Writen By Charleigh Victory


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On the 8th of April, I had my second round of Lemtrada for my Multiple Sclerosis. This involved me going into hospital for 3 days to have chemotherapy infusions. Just like last year, I had a course of steroids first, followed by the Lemrada and then an hours flush. When I arrived at the hospital on the Monday, I honestly felt fine. I didn't feel anxious or nervous because I had been through this whole process before and if anything, I felt excited to get it over and done with. My start time was delayed because the hospital couldn't find my notes.. and then they couldn't find my steroids lol. But then they found my steroids in the fridge.. which meant they had to be thrown in the bin because they were no use anymore. So we had to wait for another hospital to transfer new steroids over. While we were waiting, my own personal Lemtrada nurse, Kerry (who was an absolute angel, who told me she would treat me like royalty and she really did) did my observations. This involves her checking my temperature, my blood pressure and my heart rate. Lemtrada can cause crazy side effects during and after treatment, so it's super important to keep on top of things, so that if any of these side effects happen, they can be caught early and the right treatments will be given for them.

My first observation showed that I had a temperature, so they stopped the infusion for half an hour. My 4th observation showed my heart rate was above normal. A normal heart rate is between 60-90bpm and mine was 142. Throughout the day, my heart rate was going up and down but nowhere near where it should be. Kerry kept telling me to be calm, relax, think happy thoughts and all of that but honestly, I felt fine. I had my Mum by my side the whole time and I wasn't worrying about anything but I know subconsciously you can worry! So I laid back in my chair and tried to relax as much as possible. Time went on and my heart rate was still going up and then down and then back up again. So I actually ended up having an ECG which came back fine apart from it showed how fast my heart was racing. I think I left the hospital that day on a heart rate of 113.

Tuesday came around and when I had my first observation, It showed that my heart rate was already at 137, so my new nurse Veronica (again, absolute babe with the kindest heart) refused to do the infusion. She rang my MS nurse who also thought it wasn't a good idea to continue, with my heart rate being so high before the steroids OR Lemtrada. At this point, we were waiting for my Neurologist to give an answer as to whether he thought we should continue. After all, he knows best. After 30 minutes or so, we got the call to say that he thinks it's fine to continue and that's what we did.

My final day of treatment was Wednesday. One final push and then it was time for recovery. I was exhausted this day and really ready for it to be over. It's really hard to describe how Lemtrada makes you feel but besides the burning itch from the hives it gives you, it makes you feel drained, tired, exhausted and sluggish. Have you ever been in a position where you've had to put poison in your body, to make your life a bit more bearable? But because of the hideous side effects, (including a brain infection which can lead to death) you've had to sign a contract to basically say "Hey, even if I die, my family can't sue you"?

When I came home, that's when I had to change my routine slightly. I follow a strict diet to make sure I don't catch listeria whilst in recovery. I can't be around small kids, babies or anyone who's sick. I also have to take anti-viral medication for 28 days. This is because Lemtrada destroys your T cells, B cells which are your lymphocytes and your white blood cells. Basically... my immune system is at 0.

Four days after coming out of hospital, I started to develop chest pains. A pain right in the middle of my chest which felt like a sharp burn, a bit like indigestion or heart burn. I took Rennie tablets, I drank Gaviscon out of the bottle and even drank cows milk (I don't usually drink it) to try and help any acid that I may of had in my tummy, causing the indigestion. None of these helped and the pain started to spread down my arms, around my back and also up my neck. I knew at this point that this wasn't indigestion. I was in so much pain that I was googling ways to help chest pain and it came up with "How to tell the difference between heart burn and a heart attack". 

I knew that was a bit far fetched because c'mon.. I'm 23! I couldn't possibly be having a heart attack. But then I clicked the article anyways and my heart sank a little when it said that heart burn doesn't spread to any other places in your body but a heart attack pain can spread to your arms, your back and your neck. I was in and out of two minds, thinking of course I haven't had a heart attack but also thinking.. "Shit, maybe I have". I ended up emailing my nurse because the pain was getting too much and obviously, I had just had Lemtrada, so maybe it was something to do with that. I woke up in the morning to an email, a text message, a missed call and a voice message from my MS Nurse. The email said "I'm not sure whether the pain is on going but if it is, you need to call 999." I texted her and said that the pain had calmed down but I explained how bad it was, that it spread to other places and how I was feeling very faint and nauseous. She rang me straight away and said that a new warning had come out about Lemtrada, on Friday (3 days before this call) about it causing potential cardiac problems and that I needed to be seen by a doctor today. I rang my step-dad in hysterics and within 10 minutes, he had called me back and said "We're on our way". Less than an hour later, I was sat in isolation in the minor injuries unit at my local hospital, waiting to be seen. We were told that there was a 4 hour wait but I was seen within 20 minutes. 

The nurse put an ECG on me, asked me some questions and checked me over. She said that it doesn't sound like a heart attack and I felt a sigh of relief. My heart rate however, was 145bpm, even higher than it reached in hospital. She then called the Cardiac and Stroke unit and asked if she could bring me over. She told me to sit in the wheelchair that was outside of the room and off I went! I had never been in a wheelchair before, so I recorded it for mine and everyone else's entertainment lol. Once I was there, I got out of the chair, straight into a hospital gown and onto my bed. They asked me questions, they asked me how I was feeling and the doctor asked me a few questions about Lemtrada. Nobody knew anything about my treatment which I was expecting anyways, so the doctor had to go and do some research. I had an ECG put on me, my blood pressure checked and a cannula put into my arm. My bloods were taken, 4 different tubes and then it was a bit of a waiting game. I was sent for a chest scan, a CT scan and had my heart scanned. One of my blood tests were showing a possible blood clot, so I had an injection in my tummy to thin out my blood and that's what the CT scan was for. The nurse asked me to stand up, so that they could check my heart rate stood up, to see the difference from when I'm sat down. I looked at my mum, my mum looked at me and we both looked at the machine. My heart rate was at 184bpm and it was still going up! I burst into tears and then so did my mum. I was told to sit down and to try and stay calm. After 12 hours, a heart attack and a blood clot (on my lungs) were ruled out and I was sent home, with a prescription of Beta Blockers to take. They discharged me but have asked me to go back at the end of May for further tests.

At this point, I had been taking Beta Blockers for about 7 days now and couldn't feel a difference. I was still dizzy whenever I stood up, I was still nauseous but unfortunately now, I couldn't walk up the stairs. It was like my legs were stuck in quick mud, I didn't have any pain with it though.. I just couldn't move. I began researching my symptoms and an Overactive Thyroid came up, that's when I knew I had it. With Lemtrada, 1 in 10 people get a thyroid problem. It is very common but I honestly thought I would never get it. I had 12 months of perfect blood results (I get checked every month) but between my last check up which was early March and when I started Lemtrada (early April), something had gone wrong. My legs had been shaking like a leaf since March 31st and I have been sweating uncontrollably since that day too. I also went to the Zoo in 8 degree weather and was dripping! I remember thinking "What the fuck is going on"?

Now I know why.

Now I know why my legs were shaking so much in hospital. Now I know why I'm sweating and losing a lot of weight. Now I know why I have tremors in my hands, legs and feet. Now I know why I'm dizzy standing up. Now I know why I've got a lump in my neck. Now I know why my heart rate reached 200bpm.

On the 29th of April 2019, I was diagnosed with Graves Disease, which has caused my Overactive Thyroid - all because of Lemtrada.

I messaged my nurse on the week of the 22nd.. and told her that I know I've got an Overactive Thyroid and she got me an appointment with my neurologist the week after. However, I had to go and have my bloods done beforehand and I was told they were testing me for Graves. My blood tests came back and showed that I did in fact have Graves Disease. They also showed a possible blood clot again, just like a few weeks ago. My neurologist asked me to stick my arms out, which I did and all you could see were my hands shaking, bouncing up and down and completely out of my control. I was told I would be referred to an Endocrinologist but I am still waiting for that. I went for another blood test last Friday, to confirm whether I had a blood clot or not but I haven't had my results yet.

My current situation is exactly the same apart from my muscle weakness in my legs are a lot worse. I now have to bum shuffle (lol) up the stairs and I walk a little bit funny. So now I have two auto-immune disease, both incurable and both attack my immune system. My MS attacks my brain and spinal chord and my Grave's attacks my thyroid. Life is really tough at the moment and I feel like I'm never going to get a break. I have had 9 blood tests in the last 4 weeks and honestly... I'm tired. I won't give up though and you can bet your bottom dollar that I will never let it break me. 

"So strong and I don't know how but I can't be torn down"


  1. Just read this. A mixture of tears, pride and well wishes. I’m praying for healing for you, for rest and for good news in the near future. You deserve it. God Bless You for sharing, for courage and for determination.
    Happy Birthday too!
    The fact that you are alive, means your purpose is still very much alive too!

    Keep going!
    I’m rooting for you ❤️

  2. So much love to you Charleigh, you are so strong and beautiful and I know you can get through this. With your strong support system and everyone who loves you, never forget how loved you are. I’m so sorry you have to go through this.

    Katie x

  3. I too have Graves since 2016. I was so shaky & my heart was racing all the time & I had this constant hunger & was always feeling nauseous. One day I nearly passed out in the shower and couldnt move or walk. I could barely talk. I went to my doctor & they did test & it came back G.D. I want you to Please check out Medical Medium (he has a fb & ig) and get his book Thyroid Healing, lots of good Helpful Information. Cut out all dairy, gluten/wheat, caffeine and sugar(especially white). All of these things cause inflammation and attack the thyroid thus making it attack you. I have a few things I take which helps me daily, perhaps they will help you too. I take Acetyl L Carnitine which supports the brain (its a antioxidant protection for the brain and it helps with brain fog) , I take Herbapharm’s Thyroid Calming, A good multivitamin, I like MyKind Organics Women once a day. Oh!! I also forgot, cut out or at the very least remove seafood from your diet the mercury especially in seaweed and fish it’s bad for thyroid. Umm what else can I think of hmmm, try to cut out redmeat because It messes with your gut health, and your gut health is very important because if you get a semester in other parts of your body will be messed up thyroid heart function is brain functions etc. . Also please monitor your heart because Graves’ disease can affect it and also the medication for graves can affect it. As well as the constant up & down in med dosages which can make ur weight go up and down in short amounts of time can strain the heart and body. If I can think of anything else or come across something I think can help I will definitely try to DM U on Instagram, Your Thyroid can be healed, it just takes a lot of dang on time! Whew girl! The struggle. I know. But we go this! And you got this! And Im Praying for you! Also, I read somewhere that Ms, graves, Lupus and rheumatoid arthritis are all connected. My cardiologist also told me two weeks ago that if you have one autoimmune condition, more than likely you have another as well because they’re all interconnected one can cause the other and vice versa. The main root cause Is inflammation and gut issues. Be sure to have a Endocrinologist test you for everything Autoimmune. Xoxo -Nova

  4. This all sucks and I’m sorry you have to go through this but your strength and positivity gives me strength. I deal with Fibromyalgia and all things chronic pain. I’m a strong advocate of controlling inflammation is the remedy for autoimmune diseases. Please research naturopathic medicine. Once I changed my diet it changed my life. I had a food panel blood test done and foods that cause inflammation are a no no for me. I’m not cured but I feels so much better. Unless I eat stuff I shouldn’t eat then I have a flare up and feel like crap.



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