PPMS?

[Larssonmc2]

Hi all

I have not been dxd yet.  I am new to the whole MS thing. I take it Primary Progressive is the worse MS to be living with? Have any of you been diagnosed with it?

Is there any stats on the rate of progression, as I know everyone is different.

Cheers
Mark

[Suzie9]

Hi Mark,

Usually PPMS is more aggressive but there are very aggressive forms of relapsing remitting MS too and people with PPMS vary in their rate of disease progression.

It is harder to treat as there are no relapses and a lot of MS treatments aim to shorten a relapse and delay new relapses. It is also obviously much harder to diagnose than relapsing remitting as 6 months of deterioration is required for a diagnosis and as it can start mild it can take a while to get to this point.

Whatever type of MS though, it can take some time to reach a diagnosis.

I have a friend who has a couple of friends with MS, One with relapsing remitting and one with PPMS and the one with RRMS is much worse than the one with PPMS even though they are a similar age and diagnosed at a similar time. I think you just never know how its going to go, whatever type you have.

Aimee.

[skarey]

My brother in law has PPMS.  He's had it since 18 and is now 33.  He does have a rough time and is wheelchair bound. But he has great spirit and doesn't let it stop him. I think PPMS is more common in men than women, and is believed to be the most progressive.

Good luck to you.

[Lulu54]

Mark,
Perhaps what I should have also added was this young man had traveled on his own, was taking care of himself with limited assistance, and had a joyful outlook on life, despite having PPMS.  

There are a lot of diseases out there with horrible outcomes, many much worse than the course of living with PPMS.  

Whatever you have, I hope it isn't MS at all and something which has a cure.  Wouldn't that be grand?

I hopeto see you around here more with questions and thoughts we can discuss.

My best,
L

[Lulu54]

Hi Mark,
Relapsing Remitting MS will usually go into Secondary Progressive MS, from what I understand, as we get older (like 20 years or so after MS begins in our bodies).

Primary Progressive MS is viewed as an entirely different form of MS and is even thought to be perhaps a different disease.

When I was first at my MS neuro's waiting room a very pleasant man about your age in a motorized wheelchar  in troduced himself to me and asked what I was there for..  I told him  *suspected MS* and he looked at me and said *I hope its not primary progressive - that is what I have and you don't want that.* His few kind words stuck with me and I am always grateful that I have RRMS (or maybe SPMS) and not PPMS.

I believe we have a health page on types of MS - that may be useful to you.

my best,
Lulu