[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.

[kicker]

Sally C, I think a place for Primary/Secondary MS would be great, as both (PPMS and SPMS) have their own concerns and questions. I know I can't always relate to RRMS stuff. I will PM you with info. on finding more specific SPMS info. We could also keep each other informed on upcoming (and rare, I think) clinical trials on PPMS and SPMS - I know Johns Hopkins is to start a Phase II or III trial of Fingolimod on PPMS. They have contacted me but being non-ambulatory, doubt I'll be included in trial. Oh well. (I really mean Poop!)

[kicker]

.

In 94, I was dizzy and tired but between have little kids and working was not too concerned. In 2002 told my PCP my worsening urine (urge incontinence) was a problem. She pooed-pooed me, attributing it to twin birth and age. I said I thought it was neurological. Having sent me to a neuro-opthamologist who found nothing, she sent me to a neuro after making me promise to stop looking for answers if he also found nothing. After Evoked Potenials, LP, MRiI- there was no question I had MS. And here I am. For 8 years It wasn't baD, FOR 2 YEARS AFTER DIANOSIS i THOUGHT "NOT TOO BAD, NOT DEVASTAting like I've read. (attack of the caps., sorry) But walking got worse, in 98 went in a chair in 09 stopped walking all together. I have no pain, but left side not very responsive. I have no tingling but can't walk either. BUT, we all differ in our Journey. I read of people still on plateaus after years and years or those who progress quickly. Who knows?

I do not agree with feeling PP is the worst. I hear stuff about RR I do not ever have to feel - I just don't walk.

My first neuro (now director of MS Clinic at Johns Hopkins) put RR on form, but now I read most Neuros do as Insurance will not ok DMDs to PPs and DX of RR gives patients a chance to try DMDs. From lesion size and amount (less in PP than RRs!!) and having never relapsed and anecdotal history, I self-DXed PP, confirmed by neuros after. 1st neuro became unavailable to me. I've done Rebif and Novantrone, 4-AP all with no success. Want to try LDN, which my current neuro will not prescribe but will use info you gave me to get it.

[Koala77]

Originally Posted by kicker

Sally C, I think a place for Primary/Secondary MS would be great, as both (PPMS and SPMS) have their own concerns and questions. ...

All fixed!

The thread name has been changed to include both PPMS and SPMS. I hope that fixes it.

[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.