MS

Starting on Gilenya

07/01/2019 By Savanna Robinson Leave a Comment

So you’ve had it recommended to you by your neurologist to start treatment for your relapsing remitting multiple sclerosis. You may have been given a few options to look through, with wads of literature with the pros and cons for each medication. But in the end you have chosen to go with Gilenya (Fingolimod). And now you don’t really know what to expect, or prefer to hear personal experiences rather than the booklet from the drug company. This is my journey of what to expect when starting on Gilenya for helping with Relapsing Remitting Multiple Sclerosis. (But remember I am not a medical practioner…this is just my personal experience).

When I saw my MS nurse with my choice about which medication I had chosen to start after my relapse a few months prior, I was given a plastic sleeve with notes to take to my GP about what I was about to start and considerations that would be needed about treating my health in the future. I also had some tests to do before a script would be drawn up. And the final thing. I had to finish breastfeeding my toddler before I could start.

That was probably the most difficult part. Seeing my nurse in April, and finally weaning my toddler in late December. Then it had been so long I had to get the tests redone to be valid.

Before starting Gilenya I had to have blood tests to screen for a number of things, including immunity to Chicken Pox. One of the tests wanted wasn’t available at all pathology centres, so it pays to check that out beforehand.

Then there is the ECG required to get a baseline reading. I finally had my first one where I didn’t have to completely remove my bra and top, which makes me wonder why so many places still insist on that. Most undignified for us ladies.

And lastly an OCT on your eyes as a baseline to check swelling of the optic nerve doesn’t happen.

My GP also sent me to a dermatologist to get a baseline check for skin cancers after reading the literature provided to her and the incidence of skin cancers in the trial.

With all those complete, an authority script to purchase the medication was written up for me. Allow a few days for the chemist to get it in stock as not all keep some in stock unless they have a few patients on it.

I was booked in for an appointment to be monitored for 6 hours with my first dose. (A requirement by the Australian government for it to be on the PBS).

I had been told to expect an ECG before starting, and hourly through the time, as the 5 hour mark was where the heart rate could drop a bit with the first dose.

What I got was briefly seen by doctor who explained how the day went. Told to take my first dose, and the time for 6 hours was started. Then an ECG at the end and the go ahead from the doctor if I could go home. The bit in between was a long boring wait in the waiting room…armed with books and iPhone.

The nurse had forewarned me to be diligent in taking my tablet every day at the same time for at least the first month. If you miss a dose in that beginning part, you have to do the 6 hour observations again. When on for longer than that, missing up to 2 weeks is okay if you get caught out on a holiday.

May your journey starting Gilenya go smoothly! I’m hoping this is a positive thing in my MS journey and that it works well with minimal side effects. So far it’s been good for me for 10 months.

Living with MS – A day in the life of an MSer

Having an MRI scan

09/07/2018 By Savanna Robinson Leave a Comment

If you have Multiple Sclerosis, you are quite likely to need an MRI scan at some point. But what is it, what does it do and most importantly what is it like to have an MRI scan? Read on to learn about this medical imaging technique.

What is an MRI scan?

MRI stands for Magnetic Resonance Imaging. It’s a medical imaging technique that uses strong magnets and avoids exposing the patient to radiation (which we know is bad in large amounts). It is used in medical diagnosis of many conditions such as MS as it can provide images of the body’s organs.

Neurologists like to use an MRI scan to see if there are lesions in the brain and spinal cord of MS patients. And they track if these increase in number whilst patients take their disease modifying treatments. They are also used in other medical conditions where the other imaging techniques are not giving a clear diagnosis.

Aside from the dreaded lumbar puncture, the MRI may be the most feared thing in the diagnosis and treatment of multiple sclerosis. Particularly for those who suffer from claustrophobia. This is because the MRI machine is basically a small tube you lay down in, in a room all by yourself, and have a lot of very loud sounds thrown at you. For those who cannot stand the confined space, most places can offer an MRI with sedation. This is an option I’ve known a few MSers to use, so don’t be afraid to ask for this option if you need it.

Having your MRI scan

When you get to your MRI scan, you will have to fill out a questionnaire (if it hasn’t already been sent in), asking questions about potential metal in your body. You’ll then be asked to put on a hospital gown. And you will be called upon when it’s time for your scan. Which is never EVER on time. If a patient moves during their scan, that sequence needs to be redone, so they do love patients that can keep still for their time and keep them more to time for others.

You’ll lie down on the sliding table that goes into the tunnel and will be handed an alert button for if you are having troubles during the scan and need to get out. Different pieces of equipment may be slotted in around you, to help keep you still, and keep you comfortable during the time (my last scan was about an hour and a half long for brain and spine). You may be given head phones, and the option to listen to music…but in all honesty I’ve never been able to hear any of the music during the scan…just the breaks in between. At some point you may also need a contrast injection, depending on what your specialist has ordered. I know neurologist seem to like this to see if there are new active lesions.

Be prepared for lots of loud banging sounds, like a jack hammer digging up cement right outside your bedroom window. Sequences can range from around 1 minute to about 8 minutes in all the scans I’ve had. The best places will even let you know how long the next one will be, so you get a bit of a breathing (or twitching) space in between. I find that I also get a lot of numbness in my arm holding the emergency alert button. Fortunately I’ve never had to test if my hand will work in that numb state.

And then it will be over. The silence after the scan can seem eerie after such a long period of loud noise. And it’s a relief to feel the table slide back out of the tube and there be someone there to help get you up. It seems that these days most MRI scan results and reports are sent straight to the doctor, so you don’t even have to wait around for the scan to be printed up. Be sure to follow up with your specialist for results of your scan. And that’s pretty much it. Until your next MRI is needed.

What is MS? And what exactly does it feel like?

Pain in Multiple Sclerosis – is there MS pain or am I imagining it?

14/08/2017 By Savanna Robinson 2 Comments

What the doctors say

Is there MS pain? There are a lot of doctors out there who will constantly tell their patients that there is no pain with Multiple Sclerosis. And that might be true with how ‘real’ pain is caused with injury or infection. But there is still an aspect of pain they usually aren’t considering, but that affects many of the people I’ve met online with this disease. Multiple sclerosis pain.

As this disease is caused with interruptions in the central nervous system from lesions, there are all sorts of funky things that end up happening to our bodies that shouldn’t. Messages don’t get from the brain to certain body parts telling them to walk, to pick up things, to relax or contract those muscles sets, etc.

The body of someone with MS also has a lot of misfiring messages that get read by the body as pain because it doesn’t know what else to do with the signal that has been sent back to the brain. There is no injury or cause for it, but because of those scrambled signals it thinks “oh boy, something is wrong, we must be hurting’. And so you do! And it hurts just as much as any other injury you may have. Multiple sclerosis pain. MS pain

My latest experience

The last two days has had some of that thrown in for my enjoyment. It’s been unseasonable warm for the last month of winter, and my body’s internal thermostat is already broken with this MS. It is said a change of half a degree can set off the heat fatigue symptoms and that can be true with me. The change over from winter back to spring can be agony for my body, not knowing what to do with these changes. Multiple sclerosis pain. MS pain

Yesterday I had no energy and spent a lot of time on the lounge while our toddler played. Today was worse. I woke up with pain in my forearms, hands, and lower legs. It was a real struggle to get breakfast done for the little one, as it hurts to do fine motor activities like manipulate spoons. But she’d be pretty hungry if I didn’t grit my teeth and do it. Multiple sclerosis pain. MS pain

Then my husband was back home from his early morning haircut, and I could collapse in bed. Not being particularly tired, but it’s just the best place to curl up when in a lot of pain. And ironic as it sounds, even though the pain can be started off by heat, I need heat to start feeling better again. My hands and feet felt icy cold. Multiple sclerosis pain. MS pain

How MS pain feels

Now the pain. It’s like a deep ache inside my hands and makes them feel weak. But it’s more throbbing on the top of my hands and then extends back up the forearms to the elbows. Massaging the places I ache gives a temporary relief, but it’s hard to do that to both your arms at once. But it is a common action I will do in hot weather, rubbing my arms and legs to try and distract from the pain. Multiple sclerosis pain. MS pain

I was thinking this afternoon while lying in bed, what would it be on the pain scale they ask when at the doctors. I’m always wary of those scales, as people who live with chronic pain conditions have a different idea of 1-10 then someone who doesn’t. We get used to a certain amount of pain as ‘normal’. I even have a friend who has CRPS, the most painful condition ever, that completely screws up the neural pathways and has the body shut down with seizures because of being in so much pain. Multiple sclerosis pain. MS pain

Back to my story

Anyway back to my comparison. I’ve had two babies where I needed an epidural for the pain level (even though I’m one of those people who tells the massage therapist to do hard pressure). The pain I was experiencing today was at the point where I’d be asking for serious drugs in hospital. Or at least that gas which makes you forget what is happening. That’s probably why my go to before I had baby #2 was to take Mersyndol and be knocked out for the day. Normal pain killers don’t do a thing, because it’s caused by the nerves.

It’s painful enough to have me in tears from it some of the day…because it stops me doing any task I want to do. And after a sleep of a few hours, my brain says “Nope, not going to sleep any longer, but as you can’t get up and do anything, I’ll just start thinking about all the stuff you want to do and make you feel worse’. My GP has always been wary of trying anything stronger. And by the time I get to a neurologist appointment, I forget just how much pain I am in those days and to mention it. Something I must learn to do better…report on ALL my symptoms that have been happening. There’s probably an app for that! Multiple sclerosis pain. MS pain

Is it just me?

And I’m not the only MSer who reports that pain can be a deal with Multiple Sclerosis. Check any online MS forum, and there are many others reporting varying degrees of pain from things to do with their MS. A biggie can be the MS Hug, which thankfully I haven’t had since my first year of diagnosis. Multiple sclerosis pain. MS pain

So if you have just been newly diagnosed with MS, and are asking your doctor those questions of what you can expect with this diagnosis, and will there be any pain, remember they may not know the true answer for your body. It might not be their medical definition of pain. But if it hurts you, I surely class it as pain! Multiple sclerosis pain. MS pain

Interested in knowing more about what life with multiple sclerosis is like? Check this out.

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What is a Spoonie?

24/07/2017 By Savanna Robinson Leave a Comment

As a person with Multiple Sclerosis I have often found myself in situations where it is difficult explaining just how I feel and what it can be like to have this illness. There have been many analogies used to describe this and other chronic illnesses, in particular the fatigue part. Some days I feel it is like trying to move my limbs through deep wet cement. But my absolute favourite would have to be defining myself as a Spoonie, based on the Spoon Theory.

Where does the term Spoonie come from?

‘The Spoon Theory’ written by Christine Miserandino began as Christine’s way to explain her disease of Lupus to a friend. It uses spoons to describe the energy needed to do certain tasks during everyday life. Each activity uses a certain number of spoons. But unlike healthy ordinary people, a chronically ill person has a limited number of spoons available to them depending on their disease progression, fatigue levels, the weather and overall general health at the time.

People with a chronic illness (such as MS, Lupus, and Fibromyalgia just to name a few) have to carefully plan out their day’s activities based on the number of spoons they have for that day. Once those spoons are used up, they are either borrowing from the next day’s supply (which can lead to a even worse day) or simply cannot do any more for the rest of that day. And so started the trend of people with chronic illnesses explaining how tough life can be for them using this analogy. Which has also resulted in many of them classifying themselves as Spoonies as Social Media took off. I’ve seen posts by many who get tattoos or collect spoon paraphernalia to help make others aware of their health.

Using the Spoon theory to explain how I am feeling on any day is a lot easier than any other way I’ve tried in my 12 years with MS. It allows my friends to know that even though I may keenly want to meet up with them, but that my body used up all the day’s energy on simply having a shower and washing my hair. They know on a low spoon today to not expect too much from me, as even mental processing is slower on those days. And it’s at those times that my dear friends keep a close eye on me to see I’m not pushing myself through it all and over doing it, as they know I’ll feel even worse come the next day!

So I’m proud to call myself a Spoonie! My disease doesn’t define me, but being a Spoonie allows me to share with others a little bit of what my life can be like.

Come follow my Pinterest board about Spoonies.

Leave a comment about your Spoonie experiences.

Living with MS – A day in the life of an MSer

Living with depression in marriage- Depression and relationships can it work?

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Living with MS – A day in the life of an MSer

18/07/2017 By Savanna Robinson 1 Comment

Hi! My name is Savanna and this is me living with MS. The MonSter which is Multiple Sclerosis. I’m also a Spoonie.

Not every person who has MS is incapable of walking and uses a wheelchair. This was the image that many people had when I was young and would do the MS Read-a-thon in school. (I know that’s what I thought all MS people were like at that age!) Now I know differently! Most MSers look quite normal from the outside usually, as a lot of the symptoms are invisible. It’s hard to see numbness and sensory problems when you are just looking at a person.

I’ve had 3 major relapses with my MS (even though the minor relapse of symptoms is quite significant to you still as a person, neurologists think they don’t count). I’ve never needed a wheelchair or cane to walk yet. I have had some cases of my walking being greatly affected though! Think waddling like a heavily pregnant lady and feet refusing to pick up off the floor at all! Enough that the Occupational therapist left me a walker ‘just in case’.

So here is a sample of 2 days in my life as an MSer.

Day A-

It’s hard to get out of bed as I rarely feel truly rested, especially with a toddler who still wakes occasionally at night. It takes an hour to get breakfast for my toddler and myself…my mind just seems to take longer times to process stuff in the morning. We go to a mother’s group playdate, where I get to chat with other mummy’s going through similar stuff with their child. But I spend a lot of time chasing my very adventurous girl. Lunch is had at home, right before her needing a nap. I hope that she’ll go down for a few hours, as my MS nurse insists I should rest (nap) while she does, yet I still have a whole list of things I need to do while she won’t be constantly on my lap. I just manage to doze off when she wakes up. More occupying the toddler inside (as it’s too hot outside for me) and trying to do things around home. Welcoming my eldest daughter home from school. Wondering if I have enough energy to cook something for dinner or if we have the finances to get take away. Bathing the toddler, getting her into bed…which still requires an evening breastfeed as she’s not convinced about this weaning business. Then trying to complete more tasks before bed, which probably won’t be overly late as I’m so worn out.

Day B

I’m in hospital to get IV steroids for a relapse that has been going on for over a week. I’ve had numbness/pins and needles in my legs up to my chest, and starting to get that duck waddle back again. My feet don’t pick up properly and trip over any uneven surface. I’m afraid I’ll drop my 11 month old as my limbs feel weak. My reflexes test has hyper reaction to them…extreme jolting movement when they do the bottom of my feet. My muscles ache as it’s over 36 degrees Celsius outside, and even in the air conditioning my central nervous system just seems to know.

Living with MS hospital bed Jamberry catalogues — Hooked up to my IV steroids, and doing business stuff to keep busy.

living with MS cute baby playing with mobile phone cover — Juggling a toddler and time in hospital.

And from one day to the next, I don’t know if it will be a Day A with basically no symptoms, but still have to watch myself to not over do it as I’ll pay for that with fatigue later on. Or if it will be a Day B…or worse!

I find I still try to keep positive about it all, as there are worse things I could have than multiple sclerosis. And it’s not much of a life if always looking at those negatives. Life goes on, whether we like it or not! We may as well try to enjoy what we can!

I hope you now have a clearer idea of what MS can be like. Click here if you’d like to read about what is MS.

Pain in Multiple Sclerosis – is there MS pain or am I imagining it?

Breastfeeding is hard. Breastfeeding is easy. The pros and cons of breastfeeding in modern society.

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What is MS? And what exactly does it feel like?

16/07/2017 By Savanna Robinson 2 Comments

What is MS you ask? It’s what I have! Multiple Sclerosis. Commonly abbreviated to MS (as multiple sclerosis is rather a mouthful to say) or known as the MonSter in some circles. And those in the social media community with MS often refer to those with MS as MSers or PWMS (people with MS).

But what is Multiple Sclerosis?

Multiple Sclerosis is the most common neurological condition in young adults. It is characterised by scars (lesions) in the central nervous system causing misfiring messages through the body, which is how it got the name Multiple (many) Sclerosis (scars). These lesions can be seen through an MRI of the brain and spine. They are still researching for the cause of MS and a cure for it, though there are quite a few modern treatments to help patients with multiple sclerosis to improve quality of life and reduce exacerbations. It usually makes an appearance between the ages of 20 and 40. About 3 times as many women as men get MS. For me it hit just before I turned 28, when my eldest daughter was 2 years old. What is MS

Now there are a few types of Multiple Sclerosis:
Relapsing-Remitting MS- An episode of symptoms occurs (the relapse) which then go away (remittance part) ether fully or partially. This is the most common form diagnosed and what I have at the moment.
Progressive MS- This type has a gradual progression of symptoms worsening with no improvement. It is labelled primary if you first present with this form, or Secondary if you have Relapsing Remitting and it changes to this over a period of time.
CIS- This is a recently new label replacing Benign MS. It is basically a one off episode of MS that usually never presents itself again. I’ve never personally met anyone online yet with this diagnosis. What is MS

There are so many symptoms that come with MS. But a lot of them can occur from other conditions too, so an MS diagnosis is not so simple! It can take anything from a few months, to many years as other things have to be ruled out first! What is MS

Multiple Sclerosis symptoms are also unpredictable. You never know from one day to the next what you might experience. And they can affect so many functions of your body. The five major groups of symptoms are Motor Control, Fatigue, Other neurological symptoms, Continence problems and Neuropsychological symptoms. There are so many symptoms within these groups that making a list of every symptom that every MSer has can take quite a while to make. And no case of MS is alike- it’s often referred to as a Snowflake disease, as the presentation in each person is unique. (This can make it incredibly frustrating when getting treated, as a lot of doctors have never seen a case themselves). What is MS

What does it feel like?

My first sign of MS was going numb from the butt down, which then travelled all the way up to my neck. It felt like I’d drop my toddler when carrying her at the time, even though I hadn’t actually lost any strength when they performed neurological tests. What is MS

Here’s a list of the symptoms I have personally experienced in my years of having Multiple Sclerosis. Remember all cases are different, so other MSers may experience some of these things, but might also have symptoms I haven’t had. I will try to explain each as I go along, as many have special names that really don’t tell you what it’s like.

Walking difficulties and foot drop – basically foot will not lift correctly up off the ground making it harder to move it forward to walk without stumbling
numbness and pins & needles sensation- there is not an area of my body that has not been numb during my relapses.
Pars Planititis (intermediate uveitis)- inflammation of the middle layer of the eye
Dysesthetic itching- deep itches from nerves misfiring that feels like bugs crawling over your skin
Uhthoff’s Phenomena -Heat fatigue- an increase in heat worsening previous symptoms…for me it feels like trying to move my heavy limbs through wet cement and has an intense deep down ache
Numbness
fatigue – beyond tiredness…even a good night’s sleep doesn’t make you feel any better
spasticity – of bladder and various muscle twitches
tremors- in hands when fatigued
twitches in eyes when fatigued
pain
intense heat or cold sensations through parts of the body
insomnia
dizziness
sexual dysfunction
speech problems
headaches
L’hermitte’s Sign – an electrical zap down your spine when you drop your head forward What is MS

I hope you now have a clearer idea of what is MS and what it can be like. Of course remember it can be completely different to this too!

If you’d like to read up on a day living with MS click here.

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MS

What is an MRI scan?

Having your MRI scan

What the doctors say

My latest experience

How MS pain feels

Back to my story

Is it just me?

Where does the term Spoonie come from?

Day A-

Day B

But what is Multiple Sclerosis?

What does it feel like?

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