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Unread 11-20-2009, 06:15 PM   #1
Koala77
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Arrow PPMS and SPMS Support Thread

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.
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Last edited by Koala77; 11-21-2009 at 06:56 PM. Reason: Updated to include SPMS as well.
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Unread 11-20-2009, 07:30 PM   #2
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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..
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Unread 11-20-2009, 07:46 PM   #3
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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
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Unread 11-20-2009, 09:15 PM   #4
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Thanks Chamar...duh!!

Maybe some other nice person will come along and answer my question.
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Unread 11-20-2009, 09:31 PM   #5
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I think this is wonderful. I am sure all those with PPMS will appreciate it very much. When will it be up and running?
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Unread 11-20-2009, 09:43 PM   #6
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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

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Originally Posted by SandyC View Post
.... 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.
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Unread 11-21-2009, 09:46 AM   #7
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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!)
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Unread 11-21-2009, 10:50 AM   #8
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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.
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Unread 11-21-2009, 01:20 PM   #9
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PPMS myself, the only bad days I will have is when they end?
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Unread 11-21-2009, 06:55 PM   #10
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Quote:
Originally Posted by kicker View Post
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.
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