Thursday, June 03, 2010 limegreen asks

Q: I have secondary progressive MS (SPMS) Any benefits to IVIG therapy? What are the risks

How do people handle the cost?

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Answers (3)

tellnhelen

6/ 3/10 10:59pm

I also am SPMS but am not sure what you mean by IVIG thearpy?

limegreen

6/ 5/10 2:26am

Info on IVIG-

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

Have any treatments been effetive for you?

-Take care

Connie

6/ 4/10 11:26pm

I took it (IVIG) for about 4 months. My blood pressure went to 190/110. My normal is 120/80 or less. My neuro says it can't do that but it did. Had no positive effects at all.

limegreen

6/ 5/10 2:19am

Thanx for your answer. Do have MS and what kind? How did you handle the cost?

No benefits at all?

Any effective treatment that you've tried?

-Take care

Connie

6/ 5/10 10:51am

I have the slow kind of MS. Had my first symptom in 1982. No diagnosis until 18 yrs later. I continued to work for years. I had insurance where I worked and get to keep it until I reach 65. I also get disability payments until I get Medicare. (I live in the USA).

I also applied for assistance with my Co pay with the company that makes Copoxone. I paid $240 a month for my meds but with Copoxone's help I pay nothing.

You might check this out.

I have been on Avenox, Betaserone, & IVIG. None of it seemed to ehlp for verylong. I am gradully getting worse but still have some very good days here and there.

limegreen

6/ 5/10 12:13pm

Thank you so much for your reply

I live in NYC

My MS is fairly aggressive -DX (and stopped work) approx. 7/7/09, on SSDI now.

Need a walker and help doing most things.

I have a great partner/caretaker

He is my rock.

Just getting used to my disability and trying to substitute things for my formally active and very independent outdoorsy lifestyle

All the best to you

JESSICA

6/18/10 9:05am

HI I WAS DX WITH SPMS IN 1999 BUT THEY DIDNT HAVE ANY THING FOR IT SO IT WAS ALL UP TO ME! SO DIET WAS FIRST I EAT ALL GREEN VEGGIE RED LEAF LETTICE BOSTON LEAFAND A LOT OF SEAFOOD AND BIKE RIDING AND THE DOC SAID DONT OVER DO IT. AND AFTER A YR&1/2 THE DOC SAIDED I HAVE PPMS A STEP DOWN I DONT KNOW WHAT YOU DOING BUT KEEP IT UP OH AND I TOOK A MULTI VIT & PRIMROSE OIL. I ONLY USE OLIVE I DONT EAT GREASY FOR AND I EAT ALOT OF CANILOPE STRAWBERRIES AND BANANAS ATLEAST ONE BANANA ADAY THEN ABOT 2YRS AGO RRMS SO I MUST OF BEEN DOING SOME THING RIGHT AND I ALSO CONSERVE MY ENERGY FOR THE THINGS THAT MADE ME HAPPY AND I THINK MAKING MYSELF HAPPY IFELT SO-SO-SO-SO-SO-GOODAND WHEN YOU FEEL THAT THAT MAKE IT A MIND AND BODY FEEL GOOD AND REMEBER TO THE BODY WHEN IT FEELS GOOD AND HEALTHY WITH THE GOOD FOODS IT CAN HEEL IT'S SELF AND I THINK THAT WHAT HAPPENED TO ME AND YOU CAN LOOK AT MY PROFILE AND SEE THE THING WRONG WITH ME BUT 2WEEKS AGO I GET DX WITH PPMS AGIAN AND THEY WANT ME TO TRY THE IVIG. SO I GOING TO BUT MY SELF ON A NEW MISSION. I WISH YOU THE BEST AND I HOPE YOU WILL KEEP IN TOUCH AND LET ME KNOW WHAT YOU DECIDE AND I WILL YOU MY BEST WISHES FORYOU JESSICA

Q: I have secondary progressive MS (SPMS) Any benefits to IVIG therapy? What are the risks

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