Natural History

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby robbie » Sat Feb 28, 2009 11:56 am

next to nothing for about twenty years,

antibiotic regime for aggressive secondary progressive MS

sarah these two statments confuse me
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mrhodes40 » Sat Feb 28, 2009 12:25 pm

Sarah should answer but Robbie since this has become everyone's natural history what's yours?
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby lionheart » Sat Feb 28, 2009 12:41 pm

Hi! I have a question for Sandy and Sarah: What was your regimen, your diet during those 20 years when you experienced no deterioration?

And were you free of absolutely any symptoms, even an itching here and there, were you feeling like absolutely healthy persons? And then what? all of a sudden with no previous history? (not talking the odd week Sarah had prior to the relapse) Puf!

Also, how old were you when dx'd?
User avatar
lionheart
Family Member
 
Posts: 60
Joined: Sat Jan 10, 2009 4:00 pm
Location: Bulgaria

Postby robbie » Sat Feb 28, 2009 12:59 pm

everyone's natural history what's yours?

started with ON 16 years ago, interferon for 8 years,progressed some through those 8 years.now in a wheelchair full time.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mrhodes40 » Sat Feb 28, 2009 1:16 pm

Thanks Robbie, I'm not quite to a chair, don't own one yet but I can see it on the horizon. Was the progression really even all the time or sort of good for long then suddenly? just curious.

And I admire your stick to-it-iveness Interferon for 8 years. Man. They should have an award.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mommasan » Sat Feb 28, 2009 1:17 pm

I still had severe fatigue, but no other symptoms for a full 9 years. MRI's also showed no progression. In 2000, due to a severly stressful even I had one minor attack, which caused tingling and numbness in my hands and arms. I lost some function permanently in my right hand. I then started copaxone, but also got pregnant and remained in complete remission for another 6 or so years, both symptomatically and radiologically. After that for a period of 2 years I went downhill fast. I was progressive/relapsing. Still having attacks and going downhill between attacks.

Sandy
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby mrhodes40 » Sat Feb 28, 2009 1:19 pm

Now I've blocked the thread Sarah question for you above................ :oops:

thanks Sandy, the stress I can see easily as vein related, but otherwise no cleear thing there, jus tsuddenly for no reason bang! of the cliff. Must have been scary.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby robbie » Sat Feb 28, 2009 1:26 pm

Was the progression really even all the time or sort of good for long then suddenly?

Just slow and steady, I have been lucky that way (no major attacks) seems much worse now because obviously the steaks are higher.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby mommasan » Sat Feb 28, 2009 1:36 pm

Marie, it was very clear whuy it happened. I was either pregnant, nursing or pregnant and nursing for almost 6 years. As soon as my milk supply dried it it started to happen.
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby mrhodes40 » Sat Feb 28, 2009 1:39 pm

I hear you there. :!:
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mommasan » Sat Feb 28, 2009 1:48 pm

Oh, I worked out like crazy. Really heavy exercise for 1 1/2 hours per day, ate a low fat diet (swank diet), took lots of supplements and anti-oxidants. But what turned me around from the first four years of the disease when I was relapsing every 3-4 months was oral myelin. It wasn't supposed to work, but it stopped the disease in it's tracks for me.
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby mrhodes40 » Sat Feb 28, 2009 1:53 pm

clear whuy it happened. I was either pregnant, nursing or pregnant and nursing for almost 6 years.

I see. Back to the lactation thread eh? I guess we should all be Michelle Duggar, :lol: :lol: for our UK friends that's a family that has 18 children on reality TV...they have a religious belief in "quiverfull" so they do not use birth control at all!
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mrhodes40 » Sat Feb 28, 2009 1:56 pm

when I was relapsing every 3-4 months was oral myelin. It wasn't supposed to work, but it stopped the disease in it's tracks for me.

You were hoping for tovaxin huh? I knew a woman who ate cow brains for her MS for that reason; that was before mad cow was common knoledge.
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby mommasan » Sat Feb 28, 2009 2:04 pm

I wasn't a tovaxin candidate. I had MS for much too long for that trial. JH did accept me for Revimmune. It's given my my life back. I was about 6 months away from a nursing home. Still struggling greatly, but I have a life.
User avatar
mommasan
Family Elder
 
Posts: 119
Joined: Sat Mar 15, 2008 4:00 pm

Postby robbie » Sat Feb 28, 2009 2:53 pm

6 months away from a nursing home.

how did you know that mommasan or was just an expression, man i just have a hard time beleiving the claims folks make about all these drugs.but everyone is different right.
Had ms for over 19 years now.
User avatar
robbie
Family Elder
 
Posts: 1148
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service