Multiple Sclerosis – 29 Tips You Might Not Know About MS
A friend of mine Mags Green whom I frequently call super woman, wrote this information for MS Readathon run by Multiple Sclerosis Ireland Unfortunately she has first hand experience and is living with MS and by god she lives. Having 2 young fabulous children, a wonderful supporting husband and 2 Irish wolf hound which carry you away while walking them, juggling a career while doing an PHD, the best cake maker I know, is just a small part of her every day life. So here are some MS Facts from Mags Green to help us understand just a fraction of what it is like living with MS
She shared random facts about MS that you may or may not know…Hope you find this informative.
MS Fact #1
Multiple Sclerosis is much more prevalent in women than men! (lucky us!!)
MS Fact #2
Multiple Sclerosis is a lifelong condition.. there is no cure.. most of us take medications of some description but it doesn’t make you better. MS affects your brain and spine (your central nervous system) and does all sorts nasty things. Sometimes I have numbness, sometimes tingling, sometimes an MS hug (not as nice as it sounds), sometimes I can’t walk properly, sometimes I’m in extreme pain and sometimes my left eye doesn’t work.. to name but a few of the afflictions it can cause. This condition brings with it a myriad of symptoms and you never know what you’re going to get on any given day!!
MS Fact #3
Fatigue is a big challenge for those of us with Multiple Sclerosis. It is a symptom that can make even the simplest task impossible. I read a good description of it the other day from a gentleman called David Bexfield “Few people understand how MS fatigue can be utterly pancaking. Imagine pulling an all-nighter, make that three of them in a row, and then running a marathon. Backwards. On stilts. While juggling chainsaws.”
With fatigue it’s not like normal tiredness.. you can’t go to bed and sleep and feel okay again. With fatigue you never feel rested, lifting your head off the pillow takes effort, getting dressed seems insurmountable, reading, showering, eating, moving just all seems too much… and I get brain fog along with my fatigue but that is a story for another day!!
MS Fact #4
So yesterday I mentioned brain fog… Brain fog is more than just the occasional forgetfulness that most people suffer from. It is a cognitive impairment that can affect conversation, short-term memory, and the ability to concentrate and focus.. it can also impact critical thinking and word finding. It’s not the nicest symptom. Brain fog is very common in people with Multiple Sclerosis. It’s a frustrating affliction and when it happens to me my concentration is well and truly shot. I stopped speaking at conferences when it happened me the first time and I stopped giving face to face summer courses because of it as I was so worried I would forget words that I needed to present the material. It really impacts confidence… and when I had it first time around I didn’t think that I would ever be able to continue studying.
Luckily for me it comes and goes and although I still get bad days (usually when I’m stressed or tired) I can still study most of the time.
MS Fact #5
MS is a lifelong condition but people don’t usually die from it (usually being the important word here!) … experts say that a person with MS generally lives 7 years less than the average lifespan. When I was diagnosed several people asked me ‘how long do you have left?’… so yeah it’s really important not to ask someone with MS that question!!
I remember a doctor telling me that it’s more likely that I’ll die from heart disease or some form of cancer than from MS… so that’s erm… heartening!!! ..
MS Fact #6
Lots of Multiple Sclerosis symptoms are invisible, so you can’t tell by looking at someone if they have MS, or what they’re going through.
At any given time I have a headache, pain, pins and needles or numbness or a loss of balance and general clumsiness (which sometimes makes people think I’m drunk!). I might sit there chatting to you like I’m grand but you don’t know what is going on under the surface.
MS Fact #7
There’s no such thing as a “typical” symptom of Multiple Sclerosis because each person experiences the disease differently. The same symptoms may come and go frequently, or you may regain a lost function, such as bladder control. The unpredictable pattern of symptoms has to do with which nerves your immune system attacks at any given time.
You never know what you’re gonna get! Sometimes you wake up with a bad leg or a hand that forgets how to work or a dodgy eye.. and everybody is different!
MS Fact #8
Stress can make symptoms worse when those with Multiple Sclerosis experience high levels of physical or emotional stress. As we know stress really impacts us in many areas and MS is no different. Stress is my big trigger for symptoms and flares… so I try very hard to avoid it if I can… and when people bring it to my door I’m getting better at saying ‘get lost!’
MS Fact #9
There are several different types of Multiple Sclerosis .. I have RRMS …
Relapse-Remitting (RRMS): alternates between relapse and nearly full recovery.
Primary Progressive (PPMS): steadily progresses from onset.
Secondary Progressive (SPMS): initially RRMS, progresses to a steady worsening.
Progressive-Relapsing (PRMS): progressive from onset, with clear acute relapses.
There are lots of different things that people do to ‘control’ MS, some swear by diet, some swear by the many different types of medications and some people choose not to do anything different. Everybody has their own way of dealing with it and that has to be respected as everyone is different.
I try to be careful with my diet – nothing too hectic, I just try to eat healthily and drink green juices (but I do lapse from time to time for long periods of time and I really feel the difference when I do!). I go to acupuncture regularly which I find makes a big difference to me, when I was first diagnosed acupuncture was the only thing that gave me any form of relief. I definitely feel better after acupuncture and it helps me in a variety of different ways – it must be good if someone like me who is terrified of needles willingly goes to it!! I am also on medication, I get injections (more needles) three times each week. I don’t think that there is any one right answer for the treatment of MS … I just think that everyone needs to do what they feel is best for them. A good consultant is really important too – my consultant is wonderful and really helped me to ease into my diagnosis gently!
MS Fact #10
Multiple Sclerosis can cause eye problems.
A problem with vision is one of the most common symptoms of MS, and often one of the first that people with MS notice. The symptoms can include blurred vision, double vision (diplopia), optic neuritis, involuntary rapid eye movement and occasionally, a total loss of sight.
Over the last 5-6 days my eyes have been giving me a little bit of trouble. My left eye is particularly poorly behaved at the moment! Today I thought they were getting a little better but then this afternoon I had a dimming of colour and more blurring… it’s not the most pleasant experience! Thankfully this doesn’t happen to me typically and generally only when I am under lots of stress.
MS Fact #11
Research has shown a link between vitamin D and Multiple Sclerosis. The nutrient can act as a protector against MS, and it may lead to fewer relapses in people who already have the disease. I take lots of vitamin D.
MS Fact #12
In Multiple Sclerosis, a person’s immune system attacks the central nervous system, causing inflammation that damages myelin, the fatty coating that insulates and protects nerve fibres… when this happens it’s called a relapse and there is no cure.. they can give you steroids but I prefer to avoid those when I can!
Think of a wire with damaged insulation! So realistically the only thing that is tough enough to kick my ass is my own immune system!
MS Fact #13
I told you about the myelin sheath and that it gets damaged if you have Multiple Sclerosis … the sites where the myelin is lost appear as scars. This is why multiple sclerosis means many scars! The appear on the MRI scan as little white marks.. this can happen completely unbeknownst to you even with no symptoms!
MS Fact #14
Multiple Sclerosis is life changing in many ways .. but you can live a very happy and whole life with MS.
This is a really important fact for anyone facing a new diagnosis. I thought my life was over when I was diagnosed.. but now I know it’s far from over
MS Fact #15
Two-thirds of people living with Multiple Sclerosis remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to help conserve energy.
Quite early on in my diagnosis someone said to me that they had watched a show about life from the perspective of a wheelchair user and it made them think of me… I guess it’s just important to be aware that MS impacts people in different ways and to be careful about what you say.
MS Fact #16
Trigeminal neuralgia, sometimes called tic douloureux, is a type of nerve (neuropathic) pain in the side of the face and can be a symptom of multiple sclerosis.
I get this and it’s incredibly painful. The first few times that it happened to me I was terrified. For me it shoots down from just above my ear and goes the whole way down my jaw – it’s an intense stabbing pain. It can last for a few seconds, a few minutes or an hour.
MS Fact #17
The MS hug, also known as banding or girdling, is a symptom of multiple sclerosis in which someone feels as if they have chest pain, rib pain or a tight uncomfortable band around their chest. It can be felt anywhere between the neck and the waist and may feel so tight around the chest that it’s painful to breathe.
MS Fact #18
It’s a late one tonight … and it’s a personal one .. note to self .. when you have MS and are currently experiencing an exacerbation it’s not a good idea to stay up really late working on an assignment when you are wrecked tired because it will leave you shattered for the next three days … ..so all those symptoms I’ve described over the last number of days get worse when I’m tired so I tend not to stay up late … but a deadline was calling!! you live and learn!
MS Fact #19
Unfortunately, more than half of people with Multiple Sclerosis experience difficulty sleeping. Inadequate sleep leads to fatigue, the most common and one of the most debilitating symptoms of MS. It also causes daytime drowsiness and lack of mental clarity.
MS Fact #20
If you have Multiple Sclerosis you get a neurologist.. I have a lovely Neuro and he really puts me at ease every time I see him. For me seeing neurologist means getting a battery of tests once a year to see if everything is working as it should be .. it involves checking my eyes, my strength, my balance, my reflexes and what I like to call the scratchy foot test. He usually orders an MRI and sometimes an extra test involving lots of wires stuck all over my head to make sure my eyes are working properly.
MS Fact #21
Episodes of remission for those of us with Multiple Sclerosis can last weeks or can last years sometimes. There’s no way of knowing, so it’s really important to embrace good health when it comes
MS Fact #22
MS can impact your memory (for me especially when I’m tired)
MS Fact #23
Multiple Sclerosis doesn’t impact your ability to have children. You can go through a period of remission when you are pregnant but are more susceptible to a relapse during the 6 months after birth. This is the final week of the MS Readathon. I would really appreciate any donations you can make this week please, then I’ll stop torturing you.. I promise
MS Fact #24
Whilst legal protections are in place, discrimination still happens in the workplace and worry of discrimination is often the main reason people resolve to deal with their MS without seeking support from their employer. Many people with MS can continue to work and stay in paid employment for many, many years after diagnosis.. we are all different and MS progresses differently for all of us .. being in a supportive work environment can make a big difference to people with MS… and to people without MS! Being kind doesn’t cost a thing
MS Fact #25
This is a new fact for me too!
The most common cause of breathing problems in MS is the loss of muscle strength in the chest and abdomen. Muscle weakness is a common MS symptom, and the muscles you use to breath are just as prone to weakness as those in your arms or legs.
MS Fact #26
This one upsets me a lot – Children can get MS – it’s called paediatric MS, it shares its roots with adult MS but differs in several notable ways. Kids typically have RRMS and only exhibit symptoms during periods of flare (unfortunately these are more frequent in children than adults), outside of this they display minimal neurological symptoms. Because symptoms start when they are still children, studies show that they ultimately reach disability at a younger age than someone with the adult version of the disease. This type of MS is most common in teens, just 1% of people develop MS before the age of 10.
MS Fact #27
MS can impact your speech. Neurologically speaking, dysarthria refers to speech abnormalities caused by nerve damage to areas commonly in charge of vocalizing. Selma Blair has been very open about her journey with MS and has raised some awareness around dysarthria.
MS Fact #28
Studies have suggested that up to eight out of ten people with MS experience bladder accidents at some time.
MS FACT #29
MS can impact hearing. The fluttering and ringing in your ears can be really distracting and the decrease in volume can be a little bit annoying too!
There are so many people that wear that invisible super hero cloak as they go through so much in their own private life and yet still gives, helps and enjoy life to the full and this is why I frequently call Mags Super Women.
Thanks for your insights Mags.