[Koala77]

This sticky has been added to fulfill a need for those with Primary Progressive MS, and Secondary Progressive MS.

Both PPMS and SPMS differ from Remitting/Relapsing MS, and we recognize that members in these classifications of MS have different needs to members with RRMS.

With that in mind, this thread has been formulated for those members to discuss their trials and tribulations, or to simply keep in touch.

I hope all will find this thread beneficial.

[SallyC]

Hi Annie, I'm not PPMS....I guess I'm in the SPMS club, but what's in a name.?

That's my question....What reasons did your MS Neuro give you, for a DX of PPMS? Do you feel like you are constantly progressing in disease and disability? Do you reach a plateau, when you stop progressing, for a time? Have you tried LDN, to maybe help keep you from progressing so fast?

I seem to have stopped progressing, but am pretty darn stuck in a scooter, for getting around.......and, I am deffinately progressing in age..

I hope my questions are not intrusive. in your support thread? If so, please delete it and just know that I support you..

[Chemar]

Hiya Sally

our Koala doesnt have PPMS but has started this sticky because we had a request for a subforum for those dealing with PPMS and it was felt that a dedicated thread may be the way to go for this

hope this will prove helpful for all who have PPMS

[SallyC]

Thanks Chamar...duh!!

Maybe some other nice person will come along and answer my question.

[SandyC]

I think this is wonderful. I am sure all those with PPMS will appreciate it very much. When will it be up and running?

[Koala77]

Thank you so much for your kind words Sal, but I personally don't have PPMS, I have RRMS.

This new thread was commenced in reply to a request for a place where those with PPMS could talk about the problems that they have. You'll find the post in Community & Forum Feedback: http://neurotalk.psychcentral.com/post591766-41.html

Originally Posted by SandyC

.... When will it be up and running?

It's up and running now Sandy. Please feel free to be the first poster to get it off the ground!

I do hope that the thread serves the purpose for which it was commenced.

[Gertrude]

Originally Posted by Chemar

Hiya Sally

our Koala doesnt have PPMS but has started this sticky because we had a request for a subforum for those dealing with PPMS and it was felt that a dedicated thread may be the way to go for this

hope this will prove helpful for all who have PPMS

I'm only interested in hearing from others with PPMS.

[Koala77]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

Although you say you're not interested in hearing from anyone who doesn't have PPMS and although we do not differentiate between those with PPMS and those with SPMS in this thread, I'm sure our members with PPMS would be happy to help you if they knew what you wanted.

I personally do not have PPMS but other members do, and although you only want to communicate with other PPMSers, we MSers with RRMS and SPMS might still be able to help you out with with symptoms that we've gone through ourselves over the past 20 or 30 years. You never know!

May I suggest that you give us a little more information about yourself? There are a number of us in your age group and older, and some of us have been diagnosed for many decades. I was diagnosed in 1977 and there are others who precede me.

[Snoopy]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

Hello Gertrude and welcome to NeuroTalk.

Although I do not have PPMS I am 50 years old and have been diagnosed for 26 years with symptoms that go back to childhood. As has been mentioned we do have members with PPMS but it doesn't matter what type of MS you may have many of us share the same symptoms.

[Aarcyn]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

I was dx'd in 2005 and have PPMS. Is there something I can do for you?