MS Week ’23

Irish Canna Clinic and MS Week 2023

MS is often called ‘the disease with 1000 faces…‘

MS is often called ‘the disease with 1000 faces…‘

It is the reason why it can be difficult to diagnose but like everything… knowledge is power!
I wasted a lot of time in my search for a diagnosis so my hope is that maybe by sharing my experience people might gain some awareness and get busy with the investigation earlier. So have a read of the site and if you have any question regarding anything, don’t hesitate to drop me a line via the contact form.
What is MS?
An estimated 9000 people in Ireland have MS and 55,000 in Spain.
. Women are nearly twice as likely to get MS as men. Most people start developing symptoms between the ages of 20 and 40 but in the end it is completely random who it affects.

Some Stats…

MS is three times more common in females than males. Catastrophically for peoples lives MS will generally manifest in females in the 30s exactly when they are considering creating a family. For the the boys a little later in early 40s.
People with biological relatives who have MS also have a higher risk of developing the condition. Researchers estimate the heritability — or ability to inherit MS — to be between 35–75%. First-degree relatives of someone with MS have a 2.5–5% risk of developing MS.
MS is not an inherited disorder, though. But a genetic predisposition to MS may be inherited.
Potentially dozens to hundreds of variations among genes may combine to create a genetic predisposition to developing MS.
Children of parents with MS may have a 10 to 20 times greater chance of developing the condition than the general population.
Researchers and neurologists still can’t say with certainty what causes MS. The ultimate cause of MS is damage to myelin, nerve fibers, and neurons in the brain and spinal cord. Together these make up the central nervous system.
Researchers speculate that a combination of genetic and environmental factors is at play, but it’s still not fully understood how.

So what the feck is PPMS??
Well there is no good MS but there are 4 types (see right) and I was lucky enough to get the least common version PPMS!!
Just 10% of MS-essers suffer from PPMS and what it means that you suffer symptoms from the beginning but the ‘progression’ is so slow it can not appear so debilitating in the beginning and as in my case

I was first diagnosed as having MS on January 24th 2016 in a meeting by the highly regarded neurologist Professor Xavi Montalban, of CEMCAT a fantastic MS specialised Research institution in Barcelona.
(for the retelling see MY PPMS STORY)

THE 4 TYPES OF MS

Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear
Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point
Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions
Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery

People from Northern Europe (including Ireland), America and Canada are more likely to develop MS than Asian people, Eskimos and American Indians.

Unimpressed with my MRI quality I would have to do further tests until June 16 when I was definitively diagnosed with PPMS, with the caveat that I had the least common type and there was ‘no cure, no treatment!!’
#winning
After the exhausting 4 year search for a diagnosis that had taken me 1000s of km within Brasil, across an ocean, back home to Ireland and subsequently my ‘other European home’ Barcelona while certainly not good news there was relief to know what was wrong with me!

HSCT –
Hematopoietic Stem Cell Transplant

For fear of this site turning into a medical site and boring everyone, to paraphrase this is a non FDA approved treatment which means it is not available in many countries despite being performed in hospitals all over the world but one doctor and his Moscow clinic have been having amazing results since 1989!!!
Put simply my immune system is malfunctioning and attacking my lovely nerves and HSCT, using Chemo blasts this stupid immune system to pieces, so stopping the progress of the disease… then it is rebooted with my brand spanking new lovely stem cells… avoid every fecker with flu for a while and let the recovery begin to regain much of my lost fantasticness!!!
The image on the right is taken with the great man in a party that took place directly after my transplant before entering a further 2 weeks of quarantine!

My Post Transplant party with
the Great Dr. Fedorenko!

Website for the Pirogov with all the information on the AHSCT performed there – https://hsct-russia.com/

And the private Facebook page where you will find a very active community of current and past patients interacting…

And below see me reflect with fellow HSCT Warrior Mark Gilligan who had a transplant in 2020 also with remarkable life changing results…

Another great US based resource for all things MS can be found on the ‘Healthline’ website which is rich in qualified information should you want to dig deeper into the disease !

Irish Canna Clinic and MS Week 2023

MS is often called ‘the disease with 1000 faces…‘

My Post Transplant party with
the Great Dr. Fedorenko!

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MS Week ’23

Irish Canna Clinic and MS Week 2023

MS is often called ‘the disease with 1000 faces…‘

My Post Transplant party with the Great Dr. Fedorenko!

My Post Transplant party with
the Great Dr. Fedorenko!