Hi This Is Zena, Welcome To My Online Journal.
I suffer with Multiple Sclerosis. My mum is my carer and also the editor of this website.
I have good days and bad days and my legs ache and I am tired most of the time. I have had my medication of Gabapentin increased because I cannot cope with the pain.
I had my annual MRI, I also had a CT scan done earlier this year and it was observed I have new lesions.
The professor of neurology has decided because I have relapsed, that I have to have a new course of treatement which should start in the next couple of weeks followed by a course of steriods to shut down my immune system and then the infusion. Because of Covid I cannot have visitors so will be stuck on the ward by myself.
I have already got my stash of snacks, bicuits, chocolates, sweets etc. Im not a fan of hospital food and it is not as if they will let me go to the hospital shops with my drip in tow.
Treatment – Alemtuzumab (Lemtrada).
I have just signed the consent form for the drug “Alemtuzumab” which was taken off the NHS last time round by the Europen Medicine Agency (EMA) and has been brought back in again? https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/
Prior to the treatment I have to go on a listeria diet, can’t wait (just kidding).
I now have to have more stricter screening because of the potential risks and side effects, which I assume is for the NHS benefit to cover their backs I suppose.
I often get MS hugs which feel paralysing. I have been experiencing sharp and dull headaches, but I guess that is from my lesions. I even have a pineal gland cyst lesion so it is (confirmed I have a third eye) lol, I am a spiritual being.
Like I said before no two days are the same. Depending how stressed I am will depend how my day pans out. I do suffer with depression and I do worry. Although this is not diagnosed but I do regcognise the symptoms. I do get very upset sometimes and I do try and stay focused and occupy my mind with something from the intrussive thoughts creeping in.
Stress & Studies.
I cannot cope with stress, I experince anxiety and it gets very overwhelming to the point my hands tremble. I have in the past hurled my old Acer computer across the room with rage. I am hot headed and cannot cope well with stress and problems so I am grateful I have my mum as my carer because she told she revieved a letter from the DWP today and this is how long she was on the phone for to speak in total of less than 6 minutes. If this was me I would have smashed my phone.
Several studies have shown that stressful life events are associated with a subsequent significant increase in risk of multiple sclerosis (MS) exacerbations.
My timeline of things that have happened to me although I do not always remember to document everything are:
27th September 2021.
I noticed bruising on my foot. I am very vigilant when it comes to bruising as I have been told that Alemtuzumab can cause Immume Thrombocytopecnic Pupura (ITP). Immune thrombocytopenic purpura (ITP) Formerly known as idiopathic thrombocytopenic purpura is a blood disorder characterized by a decrease in the number of platelets in the blood. Platelets are cells in the blood that help stop bleeding. A decrease in platelets can cause easy bruising, bleeding gums, and internal bleeding. In severe casestreatment may include medications to boost your platelet count or surgery to remove your spleen. https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325
22nd December 2021.
I developed a random rash on my face, I did not eat or use any new products it just came out of nowhere. I wonder if I will develop a rash when I had it last time, it looks like measles and you get it all over your body. Mine lasted a day, thank God.
15th April 2022
My lip started to swell and I had bleeding inside my mouth. As you can see from the photo it then turn all blistery. I took some antihistimines and after a few days it settled down. I did go to Boots pharmacy and they confirmed it was not a cold sore but an allergic reaction, again I never took anything out of the ordinary, no new skin or bath, detergent products and no new food, weird?
21st April 2022.
I slipped in the bath and ended bruising my lower torso. It was painful for a few days but it healed relatively quickly.
26th April 2022.
I noticed bruising large reddish purple bruising on my inner thiegh towards my knee, again very random.
20th April 2022.
I received a letter that I had to come into hospital to have my bloods (7 vials) and sign the consent form to have the treatment.
So in a couple weeks time I will be starting the treatment which I am not looking forward to because I will be immune suppressed so won’t be able to go anywhere public for a fews after that, but I should be used to it by now from past experience of previous treatment and the Covid Lockdowns.
Wish me luck and I will try to post again soon.
#multiplesclerosis #ms #alemtuzumab #lemtrada #nhs #neuorology #stress #ema #europeanmedinceagency #pip #carer