I have a serious question.
There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.
Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?
It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.
With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.
Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.
However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?
Over the years since my diagnosis, I have heard from fellow MSers:
- You don’t really know what it’s like to have MS.
- You’ll never suffer the way I do (from a sprightly 70-year old)
- MS? You don’t know the meaning of it – you’re cured now you have those drugs.
Is this helpful?
We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?
Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?
I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.
Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?
plain and simple, the people that say those things are all about me, me, me, no one is as important or worse off as me…people are just really bitter :/ MS is such a complicated thing, its amazing we have the options we have now in getting help, and that should improve given more time. and yes I realize people think they don’t have the time, but its very unlikely in this day and age that the MS will kill a person unlike say, ALS
Absolutely!
We really shouldn’t have an illness hierarchy?
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Hello,
I must admit to be a little bit jealous of those people diagnosed with MS who have had their life handed back to them by a DMT. I was diagnosed in 1994, my first relapse was in 79, possibly earlier. Only if I were to be diagnosed with my variant of RRMS in the last couple of years would I be considered eligible for a DMT. My variant progresses very very very slowly.
Another problem is that there are so many variants of MS, some types go for the bladder, some give you a bear hug, some give you drop foot and others go for the eyes. There are many many other types and combos of MS.
I don’t think everyone compares their MS to other peoples MS in a detrimental way. I think there is a fascination in the number of ways it can affect people both physically and mentally.
Too many people are terribly ignorant of MS and only too often it is difficult to recognise people with MS. Until these issues are resolved there will be a plethora of silly comments.
Patrick
Very good points, and taken on board.
And yes, silly comments help no one. Would be far better if we united under one – slightly fragmented – umbrella?
X
I agree wholeheartedly! Some fellow MSers can be so wrapped up in themselves and almost competitive when it comes to comparing symptoms.
We should be united in this world of MS in which we’ve been thrown in to 🙂
Absolutely, definitely!!
Let’s all stand together against MS??
x
I agree, I have a friend she was DX with the same as you only 7 years ago and started gilenya in January, she came off tysabri November. Her mobility speech and swallow hasn’t improved very much. What makes me mad is when an MSer say’s they’ve beaten ms through diet. A man with MS asked what my wife did to cure her MS, I didn’t like his attitude so I told him straight she died. There are some who have spms and ppms who feel they are forgotten, but as in life some are the lucky ones. Vicki used to say take life as it comes good or bad. Keep fighting. I still love reading your blogs, it’s what life is about happy sad, end of the day it’s what is best for you ? xx
Thank you so much!!
That’s a classic – beating MS through diet alone.
X
The comment from Jenifer was good except last 3 lines, there’s nothing unlikely about it. IT happens, for some decided not to go with having their meds and liquid formula through a tube as Vicki did it only lasted 9 months. Pneumonia, MS, impaired swallowing are a bad combination similar to ALS MND, the end is the same. I just tell it how it can be.
So sorry to hear that, David. Must be very difficult for you.
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The daft thing to me is no matter what two letters start your diagnosis we all have the same two at the end MS.
We all manage our illness in our own way, but to find that way I’ve asked the advice of others with MS. We need to be there for each other
An excellent point, well made 🙂
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