matie-k 17/05/18
Last reply 1 week ago
Primary progressive

I am 32, is this young to get this particular type? Also what I can expect? Apart from the unexpected. What have others experienced?

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edmontonalberta
1 week ago

@matie-k

PPMS usually hits after 40; I was fortunate to be almost 60 when diagnosed. Symptoms appeared years earlier but I am good at ignoring things… LOL

What to expect? My Neurologist explained that there are four types of MS. Three are like walking up steps. The drugs stop progression for a while; when it resumes, MS keeps walking up the steps…

PPMS is like an escalator; it never stops yet only continues at the same pace. In my situation I should get to 70 before I need a wheelchair – if I calculated correctly.

The side part is that Ocrelizumab has been recently approved in Canada. It supposedly has a 50% success ratio; which means that nobody improves, but it stops progression in 1/2 of those who receive that drug. Time will tell if I get to enjoy that experience.

What to expect in your life? Nothing changes – seriously. You have the same likes & dislikes. You have the same friends & support system if you handle things properly. I just tell people that I have MS but it is no big deal (because it is not). If perchance I walk away from a conversation abruptly because my bladder says “30 seconds or less”, I only say “MS – sorry” if anyone inquires when I come back.

And I explain that when I walk like a drunk that I am waiting for the day the Cops pull me over & ask me to walk a straight line. That always gets a chuckle. And if anyone tells me Sorry when I mention my MS, my response is they should not apologize unless they gave it to me. And if they did, just buy me a beer & I’ll forgive them…

Never had a problem with anyone yet…


stumbler
1 week ago

@matie-k

“Primary progressive MS is typically diagnosed when people are in
their 40s or 50s, though it can be diagnosed earlier, or later, than
this. Relapsing remitting MS is generally diagnosed at a younger
age, usually between the ages of 20-40, with the average age at
diagnosis being 30.”

Having quoted that, MS has no hard and fast rules, just generalisations.

There are no predictions for MS, which is highly unpredictable. just live and eat healthily. And, avoid stress (I know, not a good time, but stress is bad for MS!)

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