HSCT Stem Cell Treatment for Multiple Sclerosis

Hello, my name is Shakeem, thanks for coming to my go fund me page :)

At 21 I felt the world was my oyster. I was working in Germany at my dream job! Had amazing friends/family and life prospects - a lot to look forward to in life.

But life had other plans!

Not long after my 21st birthday, I began to get weakness in my legs, which was very strange as I was always very fit. At first, I thought maybe I’d overdone it in the gym and got something stuck in my eye (this would be a reasonable explanation) and I thought this would subside after a few days. It didn’t! It only got worse over the forthcoming weeks. This then moved into what felt like a stroke and I went completely blind in my left eye and felt a numb sensation in the left side of my body. My legs were also shaking uncontrollably intermittently, this is when I started to panic.

Don’t get me wrong, I had been to my GP in the UK a few times before this over the years with tingling sensations in my legs but I was young and healthy and was put down to vitamin deficiency. But this was different. I couldn’t stand or walk properly and something felt very wrong.

After having a brain and spine scan, which both displayed legions it was confirmed I had relapsing MS. I was scared at first but after a few weeks the symptoms faded away leaving just weakness in my legs, but my eyesight returned and numbness went away. I decided to return home to the UK where I had my family and felt safe. I went back to University and began building my life again back home but MS had other plans for me.

Over the past seven years I have had several, what doctors call “relapses or flare-ups” I call them curses lol

Biology has never been my strong point, but one thing I can tell you is that there are nerves in every single part of the body, and MS attacks nerves and breaks them down. Each time an attack happens new symptoms present themselves, with relapsing MS they do get say 60% better after time but never back to 100 and the more relapses you have, the harder it gets to heal.

I'm now 8 relapses in, on x12 different tablets daily, using walking sticks, a 6-monthly intravenous infusion and an irrigation machine for my bowels. I have had just about every infection you can imagine and the hospital is a second home to me.

My independence and any sense of dignity have been taken away from me. I often find it hard to see value within myself.

You don’t realise how valuable being able to walk, use the toilet and even consume food is until you cannot do so naturally.

I’m now seven years in, and I’m not sure if I can deal with this getting any worse, the 1st call of treatment Ocrevus isn’t stopping me from having attacks or getting new legions on my brain/spine.

HSCT is a form of stem cell used to treat MS in hopes your immune system is reset, but this is only effective within the first ten years of diagnosis. To fit the NHS's extremely strict criteria for this you need to have a certain level of damage on your brain within a small period (regardless of past brain/spine scarring only new scars are considered) which I am slightly off! Or get into a trial. Can you imagine being told you don’t have enough brain damage for treatment? Private treatment in the UK costs £125k+ anything abroad is even riskier with lots of scams and doctors reporting treatment not being carried out correctly. Also, this is for the stem cells only not after care or nursing.

Due to amazing people and charities, I have found part funding and a hospital that will support outside of the star MS trial and they seemed convinced it would work, but I will still need to part fund at a reduced cost. I have paid for the initial scans and appointments and waiting for the next steps, with treatment due for Spring 2024 but I still need to raise the remaining money to go ahead.

This isn’t guaranteed to work, but has a very good probability rate of stopping progression. In theory, no more tablets would be needed at the least and best case it may reverse some of the damage.

Writing this has been very hard for me and asking others for help isn’t the sort of person I am, feels rather shameful actually. But I’m desperate, to be honest, and there’s only so much I can get in loans and family support.

I feel like this is my last hope.

I have been paying for Amprya privately which is a medication to help people with MS have a normal nerve function. One thing I want to do after the stem cell is to help others gain access to this medication which is not offered on the NHS but can be life-changing for so many people. It’s not a cure and I have been deteriorating regardless but I do feel I would have got to this point sooner without this and it breaks my heart that NHS doctors will not even discuss this treatment unless forced to.

Thanks again for any support and also to my friends, family and workplace family for their support.