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Patients Multiple sclerosis

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Posted on

Hi all,

My sister has had MS for many years now, and I'd heard that after 55-60 MS stops being as progressive... What does that mean exactly? Does that mean she'll get better at that age? She's the only one we know who has it so I don't have anyone in our circle who I can ask about it.

Thanks for any replies!

Beginning of the discussion - 13/07/2021

Getting older with MS

• Community manager
Posted on

Hi @stephanyJ‍, thank you for opening this discussion! Let me tag some other members who can possibly share with you.

Hi everyone, how are you today? Have any of you heard about how MS can change as we age? Have any of you noticed your MS evolving as you've gotten older? Has it gotten worse? Better? 
@elmcroft25@Theawr@rubyrose69@Bryan123@MrsBBumble@02920.teri@Nealson@KarenTravers@Rose1962@Lee411@lucy2000t2000@Drclayyon@Jackline@Lizgee@Lenny62@Georgewash@funkychicken2021@Levimurfitt‍ 

Feel free to share here!

Take care,
Courtney

Getting older with MS


Posted on

Hi Stephany,

I was diagnosed with relapsing remitting ms at 18 and didn't suffer much with it until I got to 48 when I was then diagnosed with secondary progressive. This means that I will no longer have relapses but my symptoms will progressively get worse over time. I believe that is the case with most cases.

James

Getting older with MS


Posted on
Good advisor

Hi everyone.  MY MS first presented as trigeminal neuralgia when I was 27 but due to the great diversity of symptoms and differing lengths of time between these, was only formally diagnosed when I was 62.  Although a Qualified Nurse and Health & Social Care College Lecturer (retired in 2011), I had been in complete denial re: having MS.  It was only after 3 or more weeks of unremitting double vision, hypertension & tachycardia (a "hypertensive crisis" - with bp & pulse dangerously high) that I felt I had no choice but to go to A&E.  The CT scan of my brain did NOT show I was having a stroke, which I believed, subsequently when the A&E Dr asked myself what I thought was the problem, I stated "It's MS".  This was eventually verified through a lumbar puncture (and my historic and current symptoms).  I am now 70 yrs old and have learned to manage my MS, which both myself and my MS Nurse concluded in 2013 that this was when my MS, that had probably been RRMS (Relapsing Remitting MS), had progressed to Secondary Progressive even though the Consultant Neurologist, seen 1 time only in 2016 categorically stated I simply had MS and it was NOT progressive.  Since my MS "changed", I've experienced MS symptoms 24/7 (excluding "flares" - differing lengths of time where my symptoms get worse +/or experience "new" ones). Yes, this has certainly impacted everything I can do but equally believe life can still be led to the full........NOT to the same degree as once possible (my "goal posts" are probably 50% of what they had been) but MS (certainly mine), is so unpredictable, determined to NOT let this condition take more away from myself than it already has.  

Getting older with MS


Posted on

I was diagnosed 1978, but wasn't told till 2002 by my university nurse " you do have ms Hazel. No doubt about it. I had to have a push wheelchair in 1977, then an indoor NHS electric wheelchair. I had my 1st child Nov 1980 then moved to Wales. A 2nd child a boy in 1984. Still having no explanation why my legs do not work but sometimes could stand but not walk, speech problems, over exhaustion, a Sharpe cold in in head together with pain in one or other eye. I had glasses with 13 prisons, saw my 3rd neurologist Mr Brian Phillips when I was in hospital in Swansea. He said there's nothing wrong with you! I said what about my detachment problem? He said he'll do a test next week. He threw down my right leg over my left(he was scrapping my foot), I was in pain(can't spell ag...y) my back injury carried on for days. The 8 students drs in the room one said to Dr Phillips she has ms(I li read) his reply I'm not going to tell her! There I was, away from my baby son of 2 years & daughter, so decided to sign myself out.

From the student nurse practitioner telling me I have ms, I then had a specialist nurse for ms come to my home & she said it was diagnosed ms in 1978 yet then in 2002 was told by the Consultant there's nothing wrong!

Ever since I took no notice of any symptoms even pain & loss of speech & swollowing difficulties. So that's why now aged 72, I keep anything wrong with me a secret until now.

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