What scares you so much about MS?

[katesa]

Two threads in one day! I'm making up for lost time.

Anyway, I am just curious to know why MS is so feared by a lot of people on here. I often even see it lumped in with other conditions like ALS/MND which boggles my mind.

I have MS. I am normal. Every doctor and specialist I have discussed it with has assured me that, no matter what horror stories I could find on the web, MS doesn't kill and that while not curable, it can be treated effectively enough to live a pretty normal life.

OK, maybe, just maybe I will end up in a wheelchair one day. But that could happen without MS - in fact I know many people in wheelchairs, none of whom have MS.

I have got to know many other people with MS, including people who are far older than me and they say that although they have bad times, they live a pretty normal life.

So I am genuinely wondering - if MS is one of your big fears, why?

[dani1984]

MS has recently become one of my fears because I thought that you always ended up in a wheelchair and dependent on people. Also can you go blind?
ALS is a whole lot worse obviously - I can't even go into that. I am so happy that you can lead a normal life. This has taken some of the fear away from me :)

[katesa]

Blindness - very, very rarely. I'm more likely to go blind by getting whacked in the eyes by my 10 month old (he has a thing for doing that lately)

And I could be completely healthy and have no illness at all and be lucky enough to live to 100 - and I'd probably need my nappies changing and to be spoon fed regardless.

Of the people I know, the "worst" case is a lady in her late 50's who sometimes needs a wheelchair for outings when she is going through one of her flare ups. And she is still very happy with life.

---------- Post added at 17:58 ---------- Previous post was at 17:56 ----------

Just to add, thank you for answering so candidly.

I really wish I could start a whole campaign to change the misconception people have of MS

[cpe1978]

It's funny Kate - obviously you know that this was one of my anxieties and we even discussed it before I even knew you were diagnosed (in fact before I think you knew too).

My perspective has changed based on something you said some time ago. Where you referred to it as an inconvenience. Really in reality that is what the majority of long term conditions are and it is important that we blossom where we grow.

My fear stemmed from my mother. She used to work as a nurse and at one time used to do home care for people. I have very specific memories of one woman with MS who was ina wheelchair. Now there are a number of factors here. Firstly she was getting on a bit, secondly I dare say I only saw her in her bad times as that will have been when she needed care and support and thirdly it was 30 years ago and I dare say although not curable that medical science has moved on a bit.

Which moves me on to my next point. It is important we don't get too hung up on the notion of cures which i think many people with HA do. Most conditions outside viral ones etc are incurable. In the main the NHS helps us live effectively with conditions and the strong likelihood is that each and everyone of us with acquire a condition one day.

Take dementia for example. I don't think we will ever find a cure for dementia - not in my life time anyway. But I do think we will get progressively better at halting its progress to the point where most if not all people are long dead by the time it would have been a problem. Not a cure but in terms of health outcomes equally as desirable.

So when people present MS as incurable then in reality it sits alongside a whole host of conditions that in honesty medical science has got pretty damn good at managing.

[katesa]

I think you are spot on Chris. Most conditions can't be cured - even my over active thyroid/graves disease can't. But what does it matter if it doesn't either kill me or ruin my life?

And I think your assessment of that lady in the wheel chair is exactly right. An MS patient may need more care and help with mobility as they age but so do many of the population.

[Fishmanpa]

I think you are spot on Chris. Most conditions can't be cured - even my over active thyroid/graves disease can't. But what does it matter if it doesn't either kill me or ruin my life?

And I think your assessment of that lady in the wheel chair is exactly right. An MS patient may need more care and help with mobility as they age but so do many of the population.

It's important to remember that when treating an illness. Modern medicine rarely "cures" things as much as the treat and heal. I'm healed but not "cured" of my heart disease and cancer. Kate, you'll be "treated" for your ailments and quell the symptoms but not be cured. The same thing goes for anxiety. You can be treated and "healed" by the scar still remains. There is a very eloquently written thread in "General Anxiety" called "My Anxiety: A Scar" that puts this into words beautifully.

Many of the illnesses so many fear can be treated and most will heal. Hell, I'm living proof of that ;) many here are living proof that one can "heal" from anxiety and live a normal and happy life :)

Positive thoughts

[Alex94]

Hi Kate, nice to meet a fellow MSer here:)

I could ask the same question you've asked, because I'm in the same situation - I live relatively normal life, feel quite well and to be honest even if one day I will need a wheelchair or I won't be able to move my arm - I'm no loger scared of it. I've changed my attitude toward life completely since the diagnosis and I think that I could be happy even if disabled.

Of course, everything would be much more difficult, but there are worse diseases than MS. It may affect you severely, but it won't kill you. However, I'm saying it after almost a year with MS.

A couple of years ago, when I watched the news, back in my homecountry, there was a report about a woman with MS, the head of national MS society. Then I formed my opinion about this disease: ''awful, unfair thing that makes lifes of young women miserable, they always end up on wheelchairs sooner or later, then become pralysed''. Such definition hadn't changed until I heard that I have MS. Ah, and I said to myself: ''Dear Lord, please, never punish me with something like this, it couldn't make it. It's a tragedy for these people.''

Usually, when people are scared of one disease or another, they look for worst-case scenarios, afraid the same will happen to them. ''You don't get it until you get it'' - it's very true, because only when you realise that you are ill, after considering what may happen to you at worst, you look for some comforting news and realise it's not as bad as it seems. Neither me nor my family had known that people with MS can have full-time jobs, have children, do sports etc. until I found out. If I hadn't hd MS, I would never go to MS Society website, I would never read things I read and my definiton would be still the same, very far from the real one.

[RoseEve]

I feared MS for a short while until I realized that it can be managed and most people lead normal lives. When I realized this I switched to fear of ALS because it is incurable and a terrible disease. You have to remember that with HA we don't see the thousands of success stories we focus on the worst outcome. So in my mind if I had MS I would think I would be one of the few that go blind or have to be in a wheelchair.

[Catherine S]

Perhaps its the unpredictability of MS that people fear because it affects everybody differently? My brother has it and when it started 10 years ago at age 38 it was just a weakness in one leg, but enough to stop him playing his beloved football. It has progressed to him now using a wheelchair and having carers to bathe him. Glad to hear you're so positive about it, and hope your experience of it stays positive.