My mum was diagnosed with MS today... advice please?

For questions on how to support loved ones with MS.
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My mum was diagnosed with MS today... advice please?

Post by Leisa82 » Wed Apr 03, 2013 2:35 am

Hello. My mum and I are very close, she is my best friend, and today we were told that she has MS. I am here hoping someone can offer some advice on where we go from here and what the future holds for us.

My mum is 50 years old. She first saw a neurologist about 4 years ago when she had optic neuritis. Prior to that, when she was in her late 20's she experienced blurred vision; this is what the neurologist said was likely her first "episode". The neurologist sent her for an MRI where they found several plaques on the brain. He told us that he couldn't be certain that she had MS given the long time between episodes, and that if she DID have MS it was a very mild case and not to be concerned about. For the past 4 years or so my mum has been fit and healthy, but in the past 6 months she has started experiencing numbness and weakness down one side of her body, plus a few other little things like dizziness and bladder weakness. This week she went and saw a different neurologist (the first guy has since retired) and he confirmed that he is 100% positive she has MS.

My mum is having an MRI to check if any more plaques have appeared on the brain, and she is also having three daily doses of steroids next week, to try and fix the problems she has developed in the past 6 months, mainly to strengthen her leg and the bladder problem. The neurologist said he believes she has had MS for about 20 years, with the recent problems being her third episode.

Naturally, my mum is absolutley devastated and I don't know what to think or what to say to comfort her. On one hand I think it could be so much worse, but on the other hand I am so scared about the future and what it holds for us. She is scared of being in a wheelchair and not being able to look after my dad (he has his own problems) and no longer be the active, fun, young grandmother that she is. We hope that the steroid treatment gets her strength back, and hopefully she will be years until she has another episode... but our biggest fear is that this is the start of a continual string of health problems and the disease will progress quickly from now on.

So I guess I am just looking for advice from others who have been in this situation. Given that she has had MS for so long with only three episodes, is it likely she will recover and it will be some time before another mild episode like this one? Or now that she is older will the disease prgress quickly and will she end up in a wheelchair before too much longer? How much time do we have? I know these are all questions without answers, but not knowing that the future holds is the scary part.

I would love to hear form others, especially those who were diagnosed late in life and how it has affected them. Thank you :)

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Re: My mum was diagnosed with MS today... advice please?

Post by Shayk » Wed Apr 03, 2013 12:01 pm

Hi Lisa

I'm sorry about your dear Mom's diagnosis of MS and as you know, no one can tell you how likely it is if or when she may experience disease progression.

I was diagnosed at the age of 57 (about 10 years ago) and so far am doing "relatively" ok--EDSS 1 or less (altho it's never been officially "scored"--just neuros guesstimate). I think exercise, good diet and having balanced hormone levels may be "helping" but one never knows given the unpredictable course of the disease.

That said, I was personally relieved to come across this info: Good News on Aging and Developing Secondary Progressive MS
A few quotes from the article:
Once a person with RRMS is older than 45, their risk of converting to SPMS drops to 35%.

A person older than 50 only has a 20% risk of developing SPMS.

After age 60, the risk of SPMS conversion drops to 7%.
Assuming the data from this study holds, your Mom's risk of developing secondary progressive MS (when most disability tends to happen), would be in the neighborhood of 20%--much lower than if she were diagnosed at a younger age.

I'd highly recommend she continue being an active, fun grandmother. There's also lots of info on the site she can consider--ranging from diet, exercise, and supplements to disease modifying therapies if she wants to consider them.

All the best to both of you.


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Re: My mum was diagnosed with MS today... advice please?

Post by avengr13 » Fri Mar 04, 2016 10:33 am

I was diagnosed at 23 and am now 52. I was worried about my future. Should I marry? Have children? Take the promotion? Buy a house? If I had worried about what the future would hold and been paralyzed with fear, I would not have moved on to live my life by raising my daughter to 23, or by having a successful career or a full life which I continue to have.
No one person knows what the future holds. Love your mum the same as always. Be there for her to listen if she needs to talk or to help make her life easier if she has difficulties; wether it is painting her house picking up groceries or pushing her wheelchair if need be.
M.s. Is not a death sentence. Your mum has m.s but she is still the same person inside. Just love her and be there for her!
Good wishes to both of you!

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