advertisement
Reply
 
Thread Tools Display Modes
Old 11-20-2009, 06:15 PM #1
Koala77's Avatar
Koala77 Koala77 is offline
Legendary
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Koala77 Koala77 is offline
Legendary
Koala77's Avatar
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
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.
__________________
Eastern Australian Daylight Savings Time
and
my temperature


.


Last edited by Koala77; 11-21-2009 at 06:56 PM. Reason: Updated to include SPMS as well.
Koala77 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-21-2009), AZjanie (11-21-2009), Chemar (11-20-2009), DVORA (10-15-2011), DVORA65 (08-26-2011), EddieF (04-05-2011), Friend2U (11-27-2009), Grace-ful (12-09-2009), jeep4wd (12-01-2009), Jomar (11-20-2009), kicker (11-21-2009), Kitty (11-20-2009), mrsD (11-21-2009), Riverwild (11-21-2009), SallyC (11-20-2009)

advertisement
Old 11-20-2009, 07:30 PM #2
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

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..
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Old 11-20-2009, 07:46 PM #3
Chemar's Avatar
Chemar Chemar is offline
Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 28,439
15 yr Member
Chemar Chemar is offline
Administrator
Community Support Team
Chemar's Avatar
 
Join Date: Aug 2006
Posts: 28,439
15 yr Member
Lightbulb

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
__________________
~Chemar~


*
.


*
.


These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
Chemar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-21-2009), DVORA65 (08-28-2011), kicker (11-21-2009), Koala77 (11-21-2009), mrsD (11-21-2009), SallyC (11-20-2009)
Old 11-20-2009, 09:15 PM #4
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Thanks Chamar...duh!!

Maybe some other nice person will come along and answer my question.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Chemar (11-20-2009), Koala77 (11-20-2009)
Old 11-20-2009, 09:31 PM #5
SandyC's Avatar
SandyC SandyC is offline
Wise Elder
 
Join Date: Jan 2008
Location: Somewhere over the rainbow
Posts: 9,227
15 yr Member
SandyC SandyC is offline
Wise Elder
SandyC's Avatar
 
Join Date: Jan 2008
Location: Somewhere over the rainbow
Posts: 9,227
15 yr Member
Default

I think this is wonderful. I am sure all those with PPMS will appreciate it very much. When will it be up and running?
__________________
. . A woman is like a tea bag. You never know how strong she is until she's in hot water. Eleanor Roosevelt
SandyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Koala77 (11-20-2009), SallyC (11-22-2009)
Old 11-20-2009, 09:43 PM #6
Koala77's Avatar
Koala77 Koala77 is offline
Legendary
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Koala77 Koala77 is offline
Legendary
Koala77's Avatar
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Default

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

Quote:
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.
__________________
Eastern Australian Daylight Savings Time
and
my temperature


.

Koala77 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
msbluis (10-05-2016), SallyC (11-20-2009)
Old 11-21-2009, 09:46 AM #7
kicker's Avatar
kicker kicker is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
kicker kicker is offline
Grand Magnate
kicker's Avatar
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
Default

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
PPMS, DXed 2002 Queen of Maryland
Wise Elder no matter what my count is.
kicker is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-21-2009), msbluis (10-05-2016), SallyC (11-21-2009), sessa1978 (02-02-2012)
Old 11-21-2009, 10:50 AM #8
kicker's Avatar
kicker kicker is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
kicker kicker is offline
Grand Magnate
kicker's Avatar
 
Join Date: Jan 2008
Location: Ellicott City, MD
Posts: 3,834
15 yr Member
Default

.

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.
__________________
Kicker
PPMS, DXed 2002 Queen of Maryland
Wise Elder no matter what my count is.
kicker is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-22-2009), msbluis (10-05-2016), SallyC (11-21-2009), SandyC (11-21-2009)
Old 11-21-2009, 01:20 PM #9
TheSleeper's Avatar
TheSleeper TheSleeper is offline
Member
 
Join Date: Jan 2008
Location: About 35 miles southwest of Cleveland Ohio
Posts: 499
15 yr Member
TheSleeper TheSleeper is offline
Member
TheSleeper's Avatar
 
Join Date: Jan 2008
Location: About 35 miles southwest of Cleveland Ohio
Posts: 499
15 yr Member
Default

PPMS myself, the only bad days I will have is when they end?
__________________
ditched the witch
.
TheSleeper is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-22-2009), msbluis (10-05-2016), SallyC (11-22-2009), sessa1978 (02-02-2012)
Old 11-21-2009, 06:55 PM #10
Koala77's Avatar
Koala77 Koala77 is offline
Legendary
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Koala77 Koala77 is offline
Legendary
Koala77's Avatar
 
Join Date: Jan 2008
Location: Australia
Posts: 12,030
15 yr Member
Default

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.
__________________
Eastern Australian Daylight Savings Time
and
my temperature


.

Koala77 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Aarcyn (11-22-2009), Chemar (11-21-2009), msbluis (10-05-2016), SallyC (11-21-2009)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
RRMS or PPMS? Thumper2 Multiple Sclerosis 5 04-13-2009 11:43 PM
Nik-Key's support thread ---- lets keep her glass FULL!! Addy Survivors of Suicide 42 10-02-2008 10:39 AM
my mother and PPMS Natalie8 The Stumble Inn 4 09-28-2008 09:12 PM
Roll-Call-PPMS and SPMS kicker Multiple Sclerosis 15 01-29-2008 01:42 PM
hello out there -- new with PPMS bbarbick New Member Introductions 7 01-27-2008 11:29 PM


All times are GMT -5. The time now is 01:41 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.