Wondering About My Later Life Diagnosis

By msjujuro

1 min read

I found out in my fifties I had MS.

Doctors had confusing diagnoses for me and I am still learning about this disease. I am confused because they told me I would probably die from other natural causes and not MS. I was 52 at the time, now 20 years later I am thinking they may be wrong. I am losing control of many functions.

I can no longer shower by myself and my balance off. I notice my thinking is much slower and my speech is getting slower. I feel helpless and yet I try my best to exercise and keep up with a daily routine. I get infusions 2 times a year.

I am trying to seek a new Neurologist. I feel like there is something better for me out there.

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Erin Rush Community Admin
Hi, <inline-mention username="msjujuro" user-id="4553744"/> ! I think it makes sense that you are seeking a new neurologist! I would definitely keep a detailed list of your symptoms (if you aren't already doing so) so you can share all that information with your current physician or the new neurologist, when you get one. It does sound like you are experiencing a noticeable change in the symptoms you are dealing with, or a noticeable uptick in the severity of those symptoms and those deserve to be addressed. Please do keep us updated, if you feel comfortable doing so. Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
twooldcrows Member
i agree life is worth fighting for to enjoy it for what ever it is you want out of it...find a Neurologist that is Specialist in MS for they know more about it than a normal doctor and they do help .. mine has helped so much for others didn't think the problems i was having had anything to do with MS ...they were always going by what their mother did for she had it ...so get one and get a new drugs ...i have had such great success with Ocrevus...it is great ...has improved my walking ,can enjoy time in the sun with more energy ...just goes on and on ...get a better doctor that is for your better kind of life...live it ...love and happiness is good medicine....so go for it ...
toddlius Member
I so understand. I was diagnosed around 32. I'm now 57. I do sometimes wonder what my life will be like as I age. My balance sucks (I do a lot of wall-walking in the house). - Todd
Phillip PS Member
Maybe I've had MS for 10 years. I was diagnosed at 50, not long ago. I have never been offered any treatment, just 3 month waits for appointments. I'm exactly the same as the average MS sufferer I meet online, all of which are offered many treatement options. All of them! I lost the use of my hands over christmass. I got no help, but I got deserate having spent a month stuck in bed with no one to call, and I wrote threatening letters to end up with NDIS support traking a few months less, under a full year! I was concerned I could die without having anyone to help me. I'm part of the free public system. To respond to your post: I think that my symptoms are rarely MS specific. MS is just physical movements that I can no longer access. It's also stomach issues that aren't obvious. The secondary symptoms are massive. We differ a bit, but we are similar in ways that share a cause, where MS impacts on existing issues - lower back issues mainly. It's easy to die of MS the way I define it. Say, trying to move, struggling with basic movements, tensing all the wrong muscles, doing a bad job of moving... you stop moving. That will send you to an early grave. 
1. Phillip PS Member
 <inline-mention username="Lori Foster" user-id="4035613"/> Hi Lorry, I can walk a bit, say 100 meters, I don't know anymore because I find walking further a bit risky and damaging. What I think is that my lesions are worse than my MS and any amount of inflammation goes to create nerve impingement. I put it down to bad fluids. I am affected by re-existing issues (which I feel is typical) as I'm re-living past injuries that now have strange nerve sensations and paralysis. My reasoning is that I start off walking okay, I can potentially look like I'm moving without injury / disease and then drop foot, spasticity, whole limbs shut down, then incontinence and with heat I can potentially become fully paralysed, so I don't chance much with walking, though I'm on my feet in short spurts all day. I also work for a few hours and I don't mind heavy work. I have to rest up a LOT. I don't get much done so I don't get time to go out. I still have life plans and a business to reopen. I have to move to a single floor house. I would walk more except for my hip and troubles caused by wonky walking, which my physio is helping with, and you know... I see a time where I will gradually walk further, eat cleaner, socialise etc, and yet I have no idea what future I'm facing, which seems bleak when I'm stuck in bed all day, all week, all month. I have support workers, a carer, a gardener and now a cleaner which helps. The carer helps me with shopping and whatever project I've got on the go. I keep setting up a 4WD camping rig, but I already know things like the motorbike is too much to handle, even the fridge or battery and maybe setting up a tent will be very hard, but I bet you I'm far more worried than I should be. I lack motivation and yet I can keep fit if I'm smart about it, touch wood* MS is more of a 1.8 steps forward 1.6-1.9 steps back. A world of depleting gains, much like ageing in fast speed.
2. Lori Foster Member
 Hi <inline-mention username="Phillip PS" user-id="4562173"/>. It sounds like you have done a good job of surrounding yourself with support. I hope you eventually improve to a point where you feel more comfortable being out and about. Have you ever tried cooling products for those hot days? Here is an article about them that includes a link to a program that provides them for free: <a href='https://multiplesclerosis.net/living-with-ms/beat-the-heat-and-chill' target='_blank'>https://multiplesclerosis.net/living-with-ms/beat-the-heat-and-chill</a>. They can be a real lifesaver for people with MS in the worst of the heat. - Lori (Team Member)
Tamara K Sellman Moderator
Hi <inline-mention username="msjujuro" user-id="4553744"/> I think it is common for neurologists to make the blanket statement that, should you be diagnosed with MS later in life, your prognosis suggests you will live to the same life expectancy and likely die from something other than MS. I think the research and basic odds point to this. That said, if you're not doing well, you still have the right as a patient for quality healthcare to treat your MS, regardless of your age. I'm glad you're seeking out a different neurologist, one who can help you with flareups or progression and find ways for you to enjoy some relief from symptoms. It matters so much, quality of life is everything. Good luck to you! ~Tamara, community advocate