Natural History

robbie · Post by **robbie** » Sat Feb 28, 2009 10:56 am

next to nothing for about twenty years,

antibiotic regime for aggressive secondary progressive MS

sarah these two statments confuse me

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 11:25 am

Sarah should answer but Robbie since this has become everyone's natural history what's yours?

lionheart · Post by **lionheart** » Sat Feb 28, 2009 11:41 am

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?

robbie · Post by **robbie** » Sat Feb 28, 2009 11:59 am

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.

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 12:16 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.

mommasan · Post by **mommasan** » Sat Feb 28, 2009 12:17 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

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 12:19 pm

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

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.

robbie · Post by **robbie** » Sat Feb 28, 2009 12:26 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.

mommasan · Post by **mommasan** » Sat Feb 28, 2009 12:36 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.

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 12:39 pm

I hear you there.

mommasan · Post by **mommasan** » Sat Feb 28, 2009 12:48 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.

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 12:53 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,

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!

mrhodes40 · Post by **mrhodes40** » Sat Feb 28, 2009 12:56 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.

mommasan · Post by **mommasan** » Sat Feb 28, 2009 1:04 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.

robbie · Post by **robbie** » Sat Feb 28, 2009 1:53 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.