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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 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.
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.
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!
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 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.
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
- 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
- sexual dysfunction
- speech problems
- L’hermitte’s Sign – an electrical zap down your spine when you drop your head forward
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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