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 :)

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Wednesday, 17 May 2017

My Lumbar Puncture Experience

Today I am sharing my experience of having a lumbar puncture.
Please bare in mind that I am not a professional and that this post is only me sharing my thoughts and feelings on the procedure.

In January I was made aware by my neurologist that I would need to go for a lumbar puncture at some point in the next few months.
At this point in my life my only knowledge of a lumbar puncture was what I had seen on House.
You know, people wincing and crying. GREEEEEEEAT -__-

After a short-ish wait, I got my appointment through.
It was about two-three weeks before the actual day of - which was enough time for me to contact anyone to ask any questions or to re-arrange it.
In the appointment letter I received a leaflet of what to expect and what was going to happen.
I had been advised by my neurologist that I may need to travel home by car as I may need to lay down.
I sorted out my transport and decided to get a lift home from the hospital.

My appointment was for 9am *crying inside* so I was up bright and early for a shower and planned enough time for me to have something small to eat and try to chill out before having to leave.
I had to take my letter(s) along with me and I decided to take a bottle of water as I had heard that I would need to make sure I was hydrated afterwards.

I had to have other tests on the day before my lumbar puncture,
but I'll leave those out of this post as I'd like to try to be as concise as I can about the lumbar puncture itself.

Before I knew it, it was time to have the lumbar puncture.
I was shown to a bed on the ward and only had to wait a very short time for the doctor to come.
She introduced herself and then began to ask me some questions regarding any medication I was on etc.
She asked me if anyone had spoken to me about the procedure to which I said no, so she then began to discuss it with me.
The steps of what was going to happen were explained to me and I felt in really good hands.
The doctor then went to get the equipment.

I was asked to lay down on my side, she helped me to make myself comfortable and got me in the correct position for her to perform it.
Obviously I couldn't see anything that was happening so I can only talk about what I felt.
I was asked to bring my knees up towards my chest and then she lifted the back of my top.
She then wiped my back – with whatever they use, like I said, I couldn't see it  xD
The doctor had to feel where my hips are
to which I obviously responded with “good luck with that!” x'D
she said that helps her find the correct area of my back.
I could feel as she was pushing against my vertebrae, again I assume to find the correct spot.
It felt uncomfortable, it didn't hurt, just a bit uncomfy.

Once she had done this several times she then said that she was going to start injecting the local anaesthetic, some more closer to the surface and some deeper inside so that I couldn't feel the procedure being done.
It felt like the sensation of a blood test – in my back though :/ - so I felt the sharp sting and it going inside.
I know that when I have a blood test, after the needle has settled in the vein I can't really feel it anymore, well that sensation lasted a little longer because I guess the needle had a little further to go.

After a short while, (with more feeling of my hips and vertebrae) she began with the lumbar puncture.
I felt a short shooting kind of pain in my left leg.
I had been aware that this may happen by the information leaflet and the doctor had informed me of this before we started.
I let her know, she asked which leg and said that it was good as it meant we were in the right place.
After a number of times of this happening I felt the pain stronger and for longer in my leg, I told her and she said that the fluid had begun to drain.
I found myself concentrating on my breathing as a distraction.
The pain didn't last very long after that, it became more of a dull ache.
She let me know when we were half way through which was nice to know.
I was only laying there like that for a further minute or two and then she said that we were finished.
Throughout I didn't feel pain in my back, it was only in my leg that I felt discomfort.
I was surprised by this as I had imagined that lumbar puncture is in the back = my back will hurt during.

I had to stay laying like that for a little while as she checked the area, she said that I wasn't bleeding so a plaster was applied.
I then had to lie down flat on my back for 30-45 minutes as it can help to lower the chance of a headache.
I actually saw the viles with the spinal fluid in which was pretty rad :)

I could feel the slightest ache in my back but nothing too bad at all.
After about 30 minutes another doctor came to give me a blood test and said that after another 10-15 minutes I could make my way home.
It was stressed to me before I left how important it was for me to drink water and to keep hydrated.
Fortunately for me I'm pretty good with my water intake so this wasn't a huge ask.
So then we headed home :)

I had been concerned about being able to shower the following morning and the doctor told me that that wouldn't be a problem and that
as I hadn't had any bleeding I would be able to remove the dressing and have a shower
woop woop
The rest of the day my back felt tender so I didn't sit back fully in the car on the way home I just sat to the side a bit and
the same for when I got home when sat on the sofa etc.
I didn't have any headache or backache bad enough for me to have to take any paracetamol.
I drank quite a lot of water as I had been advised, so I feel that that may have contributed to the lack of headache.
When I went to bed that night I slept on my side as my back was tender but I noticed that towards the wee hours of the morning
I was able to sleep on my back quite comfortably.

I got up the next day with a similar feeling in my back, mostly noticeable when bending etc. so I kept that to a minimum... bend with your knees xD
I took off the plaster and could only see a little red dot with a small amount of redness around it, no bruising 👍
The following day I continued to stay as hydrated as I humanly could.
I had the most wonderful shower, washed and dried the area carefully and was at home in my pjs for the day so I took it nice and easy.
The days after were continued improvements with the backache
(I wouldn't call it that is it wasn't enough to take anything for it, but I cant think of a better word for it).
At the time of writing this post I am 5 days post lumbar puncture and basically feel as though I never even had it.

The experience on the whole was much easier, straight forward and much less scary than I thought it was going to be.
Every doctor and nurse I came into contact with on that day were absolutely fantastic, warm and helpful and
they truly made me feel like I was in amazing hands... and I was :)
If I knew someone who was going to be having a lumbar puncture tomorrow, I would say that in my experience, yes it wasn't the nicest thing in the world but it was nowhere near as bad as I had convinced myself it would be.

On the whole it will be something I remember forever and if I ever have to have another one,
I wont be any where near as apprehensive or scared as I was this time :)

At the time of posting this, my lumbar puncture was almost 4 weeks ago and it's as if I never had it :)
I hope that someone, somewhere finds this helpful :D
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Friday, 3 March 2017

My MRI Experience

About a week before Christmas 2016 I had a Brain and Cervical Spine MRI.
I had gotten my appointment date through around mid November so I had a while to prepare myself for the big day.
I always need to know the ins and outs of anything that's new to me. Whether it's appointments, meet ups with people or even my feelings...
Yes, you read that right xD
In time leading up to it I had been searching everywhere to find out what the process would be for the cervical spine scan to no avail :/
I was also curious to know what I would be allowed to wear.
My letter said to wear loose fitting clothes such as tracksuit bottoms and a long sleeved tshirt,
but did that mean I would be able to wear those rather than a gown?
In the end I found the whole process to be very straight forward and thought that as I had had questions,
I would share my experience to help anyone out there in the same boat as me :)
Please bear in mind that I am in no way a professional, nor do I know all the lingo! I'm just a gal who had an MRI that one time 😄

So, I had a Brain and Cervical Spine MRI.
A cervical what? I'll get into that in a bit ;)
When I got my appointment letter through, I received a survey to fill in to take along with me on the day.
It asked questions regarding if I have any metal inside my body etc. etc.
If you answered yes to a handful of the questions, you needed to contact them immediately so that they could assess what the next step was.
I didn't answer yes to those so I just took my survey along with me on the day, which they checked before my I went into the machine.

I was asked to arrive 20 minutes before my appointment time.
My mum went with me and we only had to wait a little while before I was seen.
I met one of the people who did the scan, they asked me if I was wearing any metal.
I was wearing a bra with an under-wire and I had metal eyelets on my trainers.
I let them know, they said I would need to remove my bra and told me where the individual changing rooms were to do so in private.
I was fine to leave my trainers on – I assume this was because my legs weren't inside the machine for the scan?

The whole process was then explained to me.
I was told that I was having the brain MRI and Cervical Spine MRI.
It was explained to me that my brain scan would take 20 minutes and my cervical spine scan would also take 20 minutes.
When discussing the cervical spine scan she motioned towards her neck.
Question answered... internal fist bump! xD
Both could be done with me in the same position so I didn't have to reposition after the first set were done.
A grand total of laying in the machine for 40 minutes.

I was weighed before I went into the machine room
tried not to pay attention to this bit ;D
On the 'bed' there was the paper that you see in doctors rooms covering the part you lay on and there was a section built in for your head to go on.
I sat down and they explained that I would need to lay down with my head in the specific part of the bed.
Once I was laying down they placed noise cancelling ear buds in my ears and a foam cushion under my knees to make me comfortable.
Then they added padding between my ears and the sides of the head section.
The top attachment part of it was then clipped on over my head and face.
I could clearly see through, and while I was laying there I kept think about Ripley's loader?
Except hers was way bigger, she had more room and looked 100 times more hard core than me 😒
Thinking of this distracted me for a little while anyway xD

I was handed a button that I could squeeze if I needed any help.
And then in I went.

I knew before hand that you have to lie as still as possible to get clear images so I kept that in mind throughout.
The first 20 minutes of scanning were quick 'clicky' sounds so I found myself counting them to give myself something to do xD
The final 20 minutes were more murmuring noises so there wasn't anything for me to count so I just laid there.
Throughout there were some vibrations through the bed which I had been informed about before it started. To be honest I didn't really notice them.
I must say that it felt like half the time it took.
When I was being brought out I thought “Is that it??”.
I sat up and removed the ear buds.
I was told that my consultant (neurologist) would have my results within 10 days :)

I was told through a family member who knew of people that had had an MRI
 that they experienced headaches for two days after, I was absolutely fine.

All in all it was a very straight forward experience and I would now be more comfortable to have one if need be in the future.

Please be aware that this is just my experience with the whole process.
I know of someone who had an MRI in a different area of their body a few weeks before I had mine and they 
had to wear underwear, socks and a gown.
They also weren't sent the survey, they were asked the questions when they went for the appointment.

Based on our two experiences, it seems that it isn't a blueprinted procedure from hospital to hospital.

I found the whole experience to be straightforward and - minus my contamination OCD - easy.
If I have to have another one in the future I won't be anywhere near as nervous as I was this time around :)

I hope that sharing my experience was helpful in some way :)
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