Hi, This Is Zena, Welcome To My Online Journal.

I suffer from 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 scan done earlier this year and it was observed I have new lesions on my brain.

The professor of neurology has decided because I have relapsed, that I have to have a new course of treatment which should start in the next couple of weeks followed by a course of steroids 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, biscuits, chocolates, sweets, etc. I’m 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 around 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).

https://www.lemtrada.com/stories/experiences-articles/food-safety-during-ms-treatment

https://www.nhs.uk/conditions/listeriosis/

I now have to have 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 that feel paralyzing. 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.

https://www.med.unc.edu/neurosurgery/services/pedsneuro/pediatric-neurosurgery-blog/pineal-cysts/

Daily Routine.

Like I said before no two days are the same. Depending on how stressed I am will depend on how my day pans out. I do suffer from depression from time to time and I do worry. Although this is not diagnosed I do recognize the symptoms. I do get very upset sometimes and I do try and stay focused and occupy my mind with something from keeping the intrusive thoughts creeping in.

Stress & Studies.

I cannot cope with stress, I experience 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 me she received a letter from the DWP today and this is how long she was on the phone waiting to be put through before she could speak a total of fewer than 6 minutes. If this was me I would have smashed my phone to pieces.

Several studies have shown that stressful life events are associated with a subsequent significant increase in the risk of “Multiple Sclerosis” (MS) exacerbations.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115807/

So it does not help when people and organizations cause me immense anxiety and stress, which then escalates into depression”.

Timeline.

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 Immune Thrombocytopenic Purpura (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 cases treatment 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 as I had it last time, it looks like hives 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 turns all blistery. I took some antihistamines 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, any new skin or bath, detergent products, and no new food, weird?

21st April 2022.

I slipped in the bath and ended up 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 thigh towards my knee, again very random.

20th April 2022.

I received a letter that I had to come into the hospital to have my blood (7 vials) and sign the consent form to have the treatment.

So in a couple of 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 few after that, but I should be used to it by now from past experience of previous treatment and the Covid Lockdowns.

Update 17/05/22.

I am having an ongoing issue with Cardiff Bus Concessionary Travel Card. I was issued a card that would last me for some time and out of the blue, they are insisting on my up-to-date award letter which is still being processed, giving me a deadline of 8 weeks to produce it.

My mum who is my carer phoned PIP today to get confirmation and they said they have extended the award until September 6th with 3-month reviews, the assessment is still pending but PIP(Personal Independence Payment) did agree to send out a letter as proof of the conversation. I hope that the Cardiff Bus Company aka Cardiff Council does not make it difficult for me as I do not want my MS to get worse.

PIP has assessors who are not qualified as I have a friend who is one, so I personally think and so does my mother that all applications should be assessed on the basis of the medical records and health professionals’ opinions and not by someone off the dole register.

Wish me luck and I will try to post again soon.

Useful MS Links

https://www.nhs.uk/conditions/multiple-sclerosis/

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

https://www.nationalmssociety.org/What-is-MS/Definition-of-MS

https://www.mssociety.org.uk/about-ms/what-is-ms

https://www.webmd.com/multiple-sclerosis/default.htm

https://mstrust.org.uk/

https://www.ms-uk.org/

https://cavuhb.nhs.wales/our-services/ms-multiple-sclerosis/

https://gov.wales/national-enhanced-service-multiple-sclerosis

https://mstcswansea.co.uk/

#multiplesclerosis #ms #alemtuzumab #lemtrada #nhs #neuorology #stress #ema #europeanmedinceagency #pip #carer

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Zena is studying BA Hons Marketing Management at Cardiff Metropolitan University.

Zena aspires to be a role model for young people with Multiple Sclerosis.

Zena is also 'The Assistant Editor' of Disability UK Disabled Entrepreneur Journal, and Cymru Marketing Journal.

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