Hi.. I just got Dx with PPMS....

Quack

Regular Member

Joined : Feb 2008

Posts : 29

Posted 9/6/2009 9:21 PM (GMT 0)

Hi there, I really don't have a question right now, but wanted to say hi and let you know that I just got Dx with PPMS. I was undx for approx 4 years. I notice that there isn't that much info or people online with PPMS. I wonder if its my age..in my 50s.

well, I'll talk again..

Quack

Kimber

Veteran Member

Joined : Jun 2005

Posts : 1852

Posted 9/7/2009 4:05 PM (GMT 0)

Hi Quack,

It's nice to meet you. PPMS is an unusual form of MS only affecting about 10% of MS patients. It typically does not follow the noticable attacks of other types, but instead slowly (usually so slow you dont notice) getting worse over time. My husband also has this type and went for more than a decade before he was diagnosed.

Not so much info out there on it unfortunately, probably due to the few that have it and limited amount of research that's been done on this particular form. I'd be more than happy to share what info I have though, been researching a long time =)

Take care,

Kimber

Quack

Regular Member

Joined : Feb 2008

Posts : 29

Posted 9/9/2009 4:17 PM (GMT 0)

Hi there, thanks for the information.... the more info I can get the better I feel about this condition. I appreciate any information available from you.

I don't know much about stem cell and will look at this website..

thanks again

be well

Quack

popsie

Regular Member

Joined : Aug 2008

Posts : 271

Posted 9/19/2009 4:54 AM (GMT 0)

I think drs have just "discovered" PPMS as a diagnosis though I admit am rather cynical about drs generally but mine just suggested that I might have PPMS. Eventhough I had a very strong attack at 15 and minor ones every 10 years after that. All the symptoms that reappeared after 45 when I was diagnosed with SPMS are the same as I experienced at 15.

I won't let anyone put me in a box that I am not happy with.

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