Tuesday 5 September 2017

My Journey To Being Diagnosed With MS

This is going to be a long post so you may wanna grab a cuppa and/or an assortment of snacks ;D

Today I am going to be discussing my journey to being diagnosed with Multiple Sclerosis.
I just wanted to mention that if you recognize any of the symptoms I mention in yourself, it doesn't immediately mean that it's MS, it could be anything! But PLEASE take it seriously and be checked out by your doctor.
So here we go, lets dive in :)

In 2012 the right hand side of my face went numb.
It started out with the right hand side of my tongue. I could feel it, I could speak and eat normally but it just didn't feel right.
Then the right hand side of my bottom lip.
Then my right cheek... Jawline... Ear.
And it was like that for around 4-6 weeks.
If I didn't tell anyone, they would have no idea.
I went to the doctors, they did a blood test which came back normal.
They had said to go back in two weeks if it was the same, but by that time it had started to go away so I didn't make another appointment.
I would like to point out that I was very stressed at this time. I had a lot going on.
So after Googling it, I chose to put it down to stress and I carried on as normal.
I remember making jokes about it with family and friends, honestly finding it funny. “I'm so weird LOL”.
- sigh

A couple of years later in 2014 I was walking to work one day and noticed that my right knee was numb.
Over a short space of time, half my body and half my face on the right side were numb.
Again, I was very stressed (this was when my OCD was in a particularly rough patch) and I put it down to that.
I didn't go to the doctors because I thought “silly stress, why do you do this to me *eye roll* lol”
It lasted for around 4-6 weeks like the previous time and went away on it's own.

Then in August 2016 something weird happened with my left eye.
Whenever I looked a certain amount to the left everything was doubled.
I wasn't in any pain, didn't feel uncomfortable. It was more annoying to me than anything because whenever I looked to the left, I got into the habit of having to close my right eye to see clearly.
My mum made me an appointment to see an optician to get my sight checked.
At this point I hadn't had my eyes checked for over ten years because I've always had 20/20 vision :)
So it was the fifth day of the weird double vision thing that I went to my appointment. I explained the issues I was having, so they did a run of the mill set of eye tests.
Everything was p e r f e c t.
There was nothing wrong with my eyes, I have better than 20/20 vision
- a-thank you ;D.
The optician was typing up on the computer when I jokingly said :
“I should have warned you, I get weird stuff wrong with me all the time! Half my face went numb once and then a couple of years later half my face and half my body went numb *MAJOR LOLZ*”.
I think the optician was quite shocked that I hadn't been seen by a doctor (I explained it was down to me for not going. I'm stoopid what can I say?).
I was given a note that said “Urgent” on it
- nothing like the word urgent to make your stomach flip
and was told that I needed to go to an eye doctor the following day to be checked over in more detail.
My mind was racing, 'what's with all the haste??'. 
I was seen by the doctor, who did the same tests and asked me questions about the numbness I had experienced in the past.
On the inside I was like “dude, that's the past, let's live in the now, the issue is with my eye”.
I think that they too were surprised that I hadn't gone to the doctors :/
I was asked to come back in 4 days to be seen by another eye doctor.

The day before my appointment the double vision had gone, I kept my appointment and went to be seen by the other doctor.
I explained that the double vision had gone – which I was pleased about!
The same tests were done and I also had the drops in my eyes to open my pupils. My eyes were checked over and I once again, was told that my eyes were absolutely fine.
I was honestly so relieved to hear that my eyes were healthy, the whole thing had made me begin to worry a little.
Once again I was asked about the numbness and the surprise was there again that I had not gone to the doctors.
It wasn't until being seen by these doctors that I realized how careless I had been in not taking my symptoms seriously.

After discussing my symptoms with me, the doctor said to me that I may have had a stroke.
Excuse me, what??
I nearly cried. Right then and there in front of a stranger.
They checked my blood pressure – which was fine – and I had to take some aspirin.
They said the numbness could have been caused by a stroke and that the eye may have been a stroke passing over...
(that may not be the correct words used but I was feeling quite stressed and words had lost all meaning to me at this point so don't take that as gospel).
I couldn't believe what I was hearing.
As a result, I was told that I would need to be seen by a neurologist.

That was one of the scariest days of my life to date.

Within a few weeks I had an appointment letter through to see a neurologist in about 6 weeks time.
In the letter it said that I may need to go for an MRI to rule out MS.
To be honest, at this point I didn't really know what MS was, so I, of course, took to Google.
Unfortunately when reading the list of symptoms, I was quite taken aback at how many of them I have experienced.
Between then and my MRI in December I was looking up anything and everything to do with Multiple Sclerosis - which I knew wasn't healthy but I just couldn't seem to stop.
I was worrying and I was trying to comfort myself by 'having all the facts'.

The time waiting for my appointment to see the neurologist seemed to take forever but when it came around, we had a good chat about everything.
My symptoms, the timeline of them happening etc.
He mentioned to me that he felt fairly certain that I have MS but that's why we were doing the MRI, to have a look and confirm anything.
Before leaving I had a blood test done... I forgot to ask what for. Once again, I think words had lost all meaning to me. I was pretty shocked.
I was imagining all of these scenarios in my mind of what was going to happen to me/my life/e v e r y t h i n g.

I went along for my brain and cervical spine MRI some weeks later.
Here is a *link* to my full post with all the details on how I got on.
Just under a week after having the MRI, I received information that my results appointment was booked for a date in January.
And then, it was Christmas.
It was present in my mind but I just tried to enjoy the season and look forward to my birthday in the coming weeks. I'm grateful that this all happened around this time as it was a huge distraction.
- children running around excited for presents really takes your mind off of things xD

When I had my January appointment with the neurologist, he talked me through and showed me what my MRI results showed. I have some lesions on my brain. My spine was clear.
I was kind of not expecting it - if you can believe that.
He told me that I would need to go for a lumbar puncture which would be used to confirm his belief that I have MS.
He said I would get an appointment within the next month or so and that I would meet an MS specialist before hand.

I received the appointment letters within the month for the lumbar puncture and to see the specialist.
Both were in April.

In this time I tried not to Google things/watch YouTube videos about MS as much. The lead up to my appointment in December had been a nightmare, spending most of my time thinking about MS... I wasn't even sure I had MS!

It came together that I had an appointment to see the specialist a week before my lumbar puncture.
It was an initial meeting kind of thing where I once again discussed all of the symptoms I have had to date, when they happened, how long for etc..
During my appointment, he went into a little more detail with me about my MRI results. He showed me more images than I had seen before.
I was horrified when I saw the lesions. I thought there were only one or two - I wouldn't like to guess how many there were, but it was more than one or two.
I mentioned that I had been (still am) having issues with my balance, to which he responded by showing me that I have a lesion in that part of my brain.
I feel like this is when it started to become a little real for me.
I was made aware that the lumbar puncture results held the key to where we go from there and that he didn't disagree with my neurologist's thoughts on what was going on.
The results would tell them if I did indeed have MS and if that was the case, we would then discuss treatment.
I felt as though I was in very good hands, I didn't feel rushed and that I didn't need to worry because they are in control.

A week later, I went and had the lumbar puncture in April.
Now I must admit that I wasn't looking forward to it... Who would be?! But I knew it had to be done and then that would be the end of it.
Here is a *link* to the full post about my lumbar puncture experience.
After a number of days I felt completely back to my normal self, like I had never had the procedure done. And then I waited.
The specialist had told me that the results would take up to 3 weeks, and that his team would contact me with an appointment. I would hear from them roughly by the end of May.

By the third week of May I got an appointment letter to be seen in a number of weeks time.
What came to mind was “if it wasn't MS, I wouldn't be seeing him or a member of his team. Looks like I've got MS.”

The appointment came round rather quickly. Before I knew it, it was time to go.
I was waiting a little while and then in we went.
This was it. What was going on with me?
We had a bit of a catch up, I filled him in on symptoms I had had since seeing him last and discussed my lumbar puncture results.
At some point sat in that room I was told that I have Relapsing-Remitting MS.
There it was. The answer to all of my questions.
I have Multiple Sclerosis.

We had a conversation about medication.
Since the idea of having MS had been mentioned to me, I had always been of the mind-set that I would need to go on medication.
So we discussed my options and after finishing my appointment, I had a blood test to check that I was able to begin taking it.
I met with an MS nurse for a chat, she answered all of my questions. I was told that, all being well with my blood test results, my medication would be ready for me to collect in a few weeks.
I was given an information booklet on the medication to read over.
- The story of my experience with the medication will be in a blog post to follow if you are interested in the process, side effects and anything else :)

I was a bit shaken up.
Although the idea of it possibly being MS had been in my mind for the last 6 months or so, it was as if it was the first time anyone had mentioned it.

I spent the time between then and the collection date of my medication pondering whether I should go on it or not.
I've never been a fan of medicine and avoid it at all costs.
After a while, I felt that for me personally, it was the right choice to make.
I picked up the medication and started taking it.

I was assigned an MS nurse who is there for any questions/queries/anything I may need help with.
It is a comfort knowing that I have someone there for support who is fully in the know of what I may be experiencing.

A month or so later I had my second MRI. This time only on my brain.
It is my belief that as they only found lesions on my brain last time, they didn't feel the need to scan my spine this time around. That combined with the fact that I am to date, not experiencing any physical symptoms, only sensory, which would indicate no lesions on my spine.

And  b r e a t h e  xD
So that's my story, up until now :)
Well done if you made it the whole way through this, you deserve a prize! :D
I hope that it was insightful and sheds a bit of light on what the journey is like towards being diagnosed with Multiple Sclerosis (for me anyway).

Thank you for stopping by :)