I've just gone numb down my right side!!

The night before I said that was the last time I had a proper night sleep, June 2016. I was sat in the office at work and felt my right hand side suddenly go numb, from my chest to my foot. "I've just gone numb down my right side!" I said panicking to a colleague. "Dave there's always something wrong with you!" He said with a laugh. He was right. There was always something wrong with me. I was the guy you would see wearing trainers to work because I would have spells where I would get pains in my feet but a few weeks later it would be gone. But not this time. This felt very different.

Then came the pain!

It is called Neuropathic pain and happens because of the MS attacking the nerves that carry signals from the brain to the body. I got it bad, first in my right foot on the same day I went numb. A couple of days later and my left foot started too. The pain is a relentless burning that never stops. It took a year and a half of enduring this torture whilst my medications were chopped and changed. Eventually I was referred to a pain management specialist but it quickly became evident that I was running out of medical options and so still am unable to control the pain.

The Diagnosis

I had four days on the Medical assement Unit at the Royal Oldham Hospital before they could get me in for an MRI scan. A few hours after the scan I was transferred by ambulance to the Salford Royal Neurology Department. I had a couple more MRI Scans of my brain and of my spinal cord and then a Doctor came in with a sullen look. "Mr Brooks I want to prepare you for some bad news. Mr Brooks your MRI scans came back and there are lesions all over your brain and spinal cord. These lesions are damaged caused by your own immune system attacking the Myelin sheathing that protects the nerve ending of your nervous system. Mr Brooks you have Relapsing Remitting Multiple Sclerosis, I'm very sorry."

It was a lot to take in. Multiple sclerosis (MS) can cause a wide range of symptoms and affect any part of the body. Each person with the condition is affected differently. In my case my left hand has now had pins and needles and atrophy in it for the last five years, which makes using it a little trickier than usual. My Right side is still numb, the pain in my feet is relentless and referred to as Chronic Pain. My legs are wobbly and my right leg gives way randomly. I have chronic fatigue as I struggle to sleep due to the pain and a dysfunctional bladder means despite having to self catheterise twice a day I am up in the night at least three times.

The Cure

Hematopoietic Stem Cell Transplant is a treatment for autoimmune diseases such as MS- Multiple Sclerosis that has proven to halt the disease progression.

HSCT involves extracting white blood cells from the bone marrow of the person with multiple sclerosis (MS). These cells are treated with chemotherapy to make them, in essence, forget they have MS. These cells are then transplanted back into the patient and a new immune system grows. Critics say it’s unethical, risky, usually not covered by insurance, and expensive at about $80,000 per treatment, plus travel costs.

I have a letter from my NHS consultant at Salford Royal strongly advising against travelling abroad to have the stem cell treatment done. Instead they are currently putting me through Lemtrada treatment where they re-set my immune system to delay anymore relapses. I have my second and last treatment of that in July/August this year. After that it will be up to an NHS Panel to decide if I will be eligible for other treatments. While my condition deteriorates further.

Clinging to a part-time job

I have worked in ICT Support within the NHS for the last 12 or 13 years. I've always worked hard trying to fix IT problems for the staff and developed a lot of good working relationships over the years. However after I was diagnosed with MS and wanted to return to work I was offered a role working from home (doing exactly the same thing as I had been doing for the last couple of years in the office) but for less money. That was a bitter pill to swallow, especially at a time I was being messed around with different pain medications that were spacing me out all day. My union rep said the alternative was they could just medically discharge me so I should accept the offer. So I have been working part time doing mornings from 9am - 1:30pm. I try my best to get through the working day but by the time is ready for me to log off I am only fit to crawl into bed for a nap. I suffer mentally with MS Brain Fog. Yes it is a real thing! Brain Fog causes cognitive issues like difficulty understanding conversations, thinking critically, or recalling memories, losing your train of thought mid-sentence, forgetting why you entered a room, or struggling to remember a friend’s name all of which is wildly disorientating when I'm trying to remember why or what it was that i was fixing... mid-fix. I regularly must look like an idiot on the phone when I ask the user their name for the 4th time. I try to take what positives I can from work, I do get to talk to people even if they are angry. There is not much of a light at the end of the tunnel working in IT with a degenerative neurological condition.

My family means everything to me

You know that 1/100,000 people get MS. I take solace in the fact that I'm the 1 in 100,000 and I don't have to watch one of my family or friends suffer from it. I have had to learn to accept my new limitations, things will never be the same as they were before. I'm not sure my children understand how serious this condition is yet which is a good thing. My eldest is 13 and suffers with ADHD my youngest is 7 and he is Autistic. Family life has been challenging for me and my wife for a long time and me getting MS really has thrown a spanner in the works. My wife works full time and has to be the main bread winner now as I am struggling, even just doing part time hours. I used to do everything around the house before and now my wife has to take on this role as well as working full time, getting the shopping and ferrying the children to their activities. I used to love playing football with the boys in the park and walking along the beach on holiday but now I just have to watch from my scooter. If i go at all.

The end stages of MS is life changing

People who are severely affected by MS may experience the following symptoms:

pain affecting the muscles, nerves, and joints

spasms, stiffness, and muscle cramps

tremors

sensory changes

bowel or bladder incontinence, urinary tract infections, or constipation

upper and lower body mobility limitations and weakness

difficulty chewing or swallowing

speech difficulties

problems with memory and thinking

emotional disturbances, such as depression, mood swings, and anger

pressure sores

End-stage MS may trigger life-altering changes and a reduction in quality of life. This can lead to social isolation.

I never ask for help

Until now. Please help if you can.