My Best Friend and Multiple Sclerosis (MS)

Sometimes in life we meet people that we instantly form an unbreakable bond with.  When I met Ginty aged 7 we became best friends until sadly aged 9 my family moved up to Scotland and we slowly lost touch.  Then through the power of social media we got back in touch, met up and it was like we had never been apart.  I was her maid of honour at her wedding and although she now lives hundreds of miles away we’re always in each others thoughts and when we do catch up its like we’ve not been apart.

In 2015 she was diagnosed with MS which was devastating news for her and a worrying time for all those who know her.  Since then she has battled incredible fatigue, trialed new medication, got involved in a new research project for MS medication, raised money for the MS Trust and continued to be utterly awesome.  She lives life to the full and is a true inspiration not only to me but to those both around her and to other MS sufferers.  I wanted to share her story with you so you can be as inspired as I always am by her.

Ginty is 43, is married to Rob and they live near Inverness on the east coast of Scotland.  I asked her about her MS and these are here replies:

The first symptom I had was Optic Neuritis some 7 years before my diagnosis. I obviously didn’t know at the time that this was probably the start of it.  Skip forward 7 years to January 2015 and the skin on my legs, torso and underarms had gone numb.I also had severe nerve pain under my armpit, it felt like I had really bad sunburn but there wasn’t any physical to see.

I went to my GP who suspected MS immediately, she referred me to the Neurological Dept. at Raigmore Hospital. 3 MRI’s later and I was called in to see the Neurologist who confirmed I did indeed have Relapse Remitting MS. I had 3 lesions (scar tissue on my nerves) that showed up on the MRI, 2 in my brain and one on my spinal cord.

I walked out of the Neurologist Clinic after my diagnosis on the 4th August 2015 absolutely devastated.  I am such an active person and all I could think about was what would I do if ended up in a wheel chair? My aunt passed away a few months previous with complications surrounding her Primary MS so I was under no illusion of what MS could do to you. The disease is so different for every single person, so there’s no real prognosis as it could either way, advance to Secondary or Primary or you could stay in Relapse Remitting MS (RRMS) for years without too many problems. Physically I was in good shape, the symptoms had come and gone as they do with RRMS.  After a couple of weeks of online research and support from various websites like Shift MS, The MS Society and the MS Trust, I kicked myself up the backside and said there and then that this disease wasn’t going to beat me!

Thankfully my symptoms have not had much of an impact on my daily life. The 1st year after diagnosis I suffered with fatigue a lot and various sensations like the feeling of things crawling all over your skin and electric shocks shooting down my spine when I bent my head down.

I have Active Relapse Remitting MS, there’s a few stages of MS depending on frequency of relapses and disability.  RRMS being the early stages of the disease.  The first line medication was a fortnightly self injection of an interferon drug called Plegridy.  This drug seemed to help with the MS symptoms but I had big skin reaction to the injection every time.  Big, red, hot and itchy blotches stayed on my skin for several weeks after injecting.  After a year an MRI confirmed that the drug wasn’t working and a new lesion was found on my spine.  This is when my Neurologist put me forward for a new Trial Study to be conducted at the Center for Health Science next door to the hospital.

Myself and one other person in the Highlands were lucky enough to be accepted on the Trial Study for a new drug called Ocrelizumab (Ocrevus) in the Phase III stage of trials. This drug is administered by intravenous infusion every six months and has very little side affects.  I am monitored with an MRI and Blood tests before every infusion but so far so good.  I’ve had no relapses and no active or no new lesions have been detected in the MRI’s since I started the treatment in March last year.  I was told last Friday that the trial has been extended by hopefully another 2 years, which is great news to me as they are not sure if it will be licenced for RRMS in Scotland and so far the drug seems to be a little miracle. I also don’t cost the NHS anything as the drug company (Roche) pay for all my treatment including the MRI’s and blood tests.

As for me now, I feel healthier than I’ve ever felt.  Partly due to my high level of fitness and partly due to the Ocrelizumab. The only MS Symptoms I get are the random electric shocks that shoot down my spine and I can be prone to overheating and have to take 5 minutes to cool down.

 I am highly active on a daily basis, if not a little obsessive about being constantly on the go.  Hiking up hills or across country, rock climbing (sport and traditional), kayaking, Les Mills fitness classes and just recently at the age of 43, I have taken up trail running which I absolutely love.  My neurologist has stressed that it’s very good to be very active, fit and of a healthy weight which also helps keep the MS at bay.  The MS doesn’t affect me at all these days, thanks to the wonder drug.

I’m so proud of this wonderful lady and her attitude towards life.  She has a wonderful husband and together they really do conquer the highest of heights.  If you would like more information on MS please have a look at he MS Trust website https://www.mstrust.org.uk/

You can also make a donation towards the ongoing research and support for MS sufferers and their families https://support.mstrust.org.uk/donate