MS - IVIG Treatment

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betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 10/14/2010 5:19 PM (GMT -6)   
Just currious to see if anyone here has had ivig therapy for MS.    I started my initial dose at the infusion center at my local hospital this week.
IVIG is a clear immunogobulin treatment created from the blood of 10-20K donors.   My doctor believes that it will reset the abnormally high  antibodies in my spinal fluid, which appear to be attacking my own nerves and myelin.
 
My diagnosis is pre-ms because of the results of my lumbar puncture.    I still show no lesions on my MRI's.
 
I appreciate any feedback that you can provide.
 
Peace & Healing
 
Gary
 
 

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/2/2010 3:15 PM (GMT -6)   
sorry so late in responding... only check in on occasion.
 
i had ivig for about 4 years. at the time i had rr ms and it gave me a boost. felt better after drip. had 2=day drip twice a month. definitely helped. a nurse came to my home, making it very comfortable.
 
one thing i had to do was get a port near my shoulder because my veins kept collapsing. it's really a lot better and can also be used for blood draws.
 
a few months ago, the ivig just stopped working. didn't give me energy, didn't make me want to do things. so i stopped the drip and am on ampyra instead.
 
good luck with the ivig. i swear it helped a lot. also prevented new lesions. had mri after ivig stopped working, had new lesions and am now secondary progressive ms.
 
linda

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 11/4/2010 7:26 PM (GMT -6)   
Linda,

Thanks so much for your response. I have been having some trouble with balance and walking and my neuro thought that ivig might help me with this. To tell you the truth, I haven't seen any significant improvements yet, but i understand that it can take some time.
I wish you the best.
 

Gary

Post Edited (betterhealth) : 11/4/2010 6:32:13 PM (GMT-6)


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/4/2010 7:36 PM (GMT -6)   
don't remember exactly, but it was at least a month. began w/one 2-day drip/month and ended w/two 2-day drips. once it kicked in, i felt much better. did take a long time to work, though. it gave me much more energy and i stayed upright.
 
i'm on ampyra right now and it has worked wonders. you might ask about that. it's hideously expensive but w/insurance it's almost affordable. i pay $164 for 3 months supply which normally go for something like $1000 per bottle. this med took almost 2 months to work.
 
 
good luck w/ivig. i remind myself not to fall down if i get wobbly LOL!.
 
linda
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