My MS
In this page you can read about my “adventure “ with
Multiple Sclerosis.
RRMS
DMT - Kesimpta since February 2024
“I was diagnose in June 2023 (32y.o.) with Relapsing Remitting Multiple Sclerosis which is the basis diagnosis everybody gets until proven otherwise, by time .
For the full definition and description, please check the link below, it’s explained very well, with also the Secondary Progressive and the Primary Progressive (SPMS-PPMS) descriptions.
Relapsing-remitting MS (RRMS) | National MS Society
My Diagnosis
As previously mention, my diagnosis came about in the most random of ways.
Back in April I had a relapse whilst in Italy for Easter.
I had this constant pain in my legs, and walking was very hard.
The sensibility of my feet was coming and going to the point where I couldn’t know if the water was hot or cold with absolute conviction.
More to it, I started having “shock wave” like pain, from the back of my neck down to my toes.
You know the feeling you have when you bang you elbow nerve?
Yeah that! Every time I would bend my head down I would get shocked. Not nice!
Fortunately, since 2017 I had been seeing a neurologist for a problem or the other (in retrospective, probably all related), and it so happened that I had an appointment booked just fresh back from Italy. So I shared with the doc the symptoms because to me. the problem looked nerve related and he suggested an head and spine MRI, without giving me any reason or voicing any of his suspicions.
At the time, I also had another MRI booked, and you have to chase up to have the results. So after a couple of week from the MRI, I chased the results up with the GP.
They sent over the report.
I read it.
I called them.
They confirmed
OVER THE PHONE
that I had Multiple Sclerosis.
What is that?
At this point, I wasn’t panicking yet, because I didn’t know what they meant.
That happen when I read the email, and googled it, and asked my sister to double/triple check I understood it correctly.
Well I didn’t know anything about the disease, so I asked called back the GP, asking how could they just drop a bomb like that over the phone without any insight, they said they’ll contact the competent department and to wait.
No panic.
In a matter of a few days I get the results in the post and the neurologist appointment booked.
Well you can imagine how that went.
Diagnosis confirm, no need to check the marrow.
Luckily!
That shit is painful.
But yeah I got MS,
now WHAT?
Relapses
&
Travels
This is where the link will jump to
As mentioned I do live in London, but I go back, or used to at least 2 times a year.
Right after my diagnosis I started my first round or cortisol-steroids by pills. There were effective and by the second day, I could walk better.
I went back to Italy the next month and had another relapse.
I was still trying to understand what was going on that I didn’t know the triggers.
So, of course I had asked my neuro a letter to attest that if I get sick I get the prescription filled no questions asked.
Well, I informed them that I was having a relapse I was inform to report to the emergencies at the hospital as I wound in Uk. I spent a whole day and night in the emergency department, waiting for them to sort out how to proceed since I wasn’t diagnosed in Italy.
Yap, apparently that was a problem, but only because I’m Italian.
Anyway, I was sent to the Neurology department where they would have treated me like in Uk, with cortisol steroid but in fluids was they kept me for a couple of days.
I convinced them to give me the pills, since I was oh holiday and didn’t mean to spend all my time in the hospital when I should be riding horses.
That took a good month to recover, just in time to have another one soon after in September, after going back to work.
Stress is a big trigger for relapses and, although at this point I was getting the hang of it, I foretold it was gonna happen and it did.
Right at work. Like this. 👇🏾
I was escorted to the hospital, on managers orders, by a colleague where I spent the WHOLE day because they needed to test me before giving me the pills.
AGAIN.
After that relapse a had a stable growth of disabilities, and I had to put a stop on everything.
The last relapse before I started the treatment was around November/December.
The DMT, modified some of the symptoms and I have constant problem with mobilities that is hard for me at this point, to say when I’m relapsing.
As you can see I had a lot in a little amount of time, and unfortunately, every relapse has left a bit of damage behind.
Since I started the DMT Kesimpta in April 24, I have been unable to single out a relapse. I would say I had maybe another one, but at this point in time, I haven’t had the last MRI scans back to see what’s going on.
The DMT self-injection is painful but fast, the side effects are a pain in the ass.
I didn’t have any for a good few months, beside the flaming pain down the right leg.
Yap letterally feels like is on fire.
Anyway, I had the “flu” like side effect around like the 4th month and it did knock me on my ass of a few days.
The next injection was more like the pain I have during a relapse and it took about the same time, before it cleared up.
Seems like, the more I do it, the weaker I become to it.’
I don’t like that it’s lowering my immune system.
I had a strong one all my life and rarely fall ill.
Look at me now ah!
.
