IVIG Treatment --- New Member

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Sizzle
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/6/2008 10:26 AM (GMT -7)   
I was diagnosed with MS in June of 08. My symptoms are blurry vision in both eyes, numbness in right hand and left finger tips. I have had two sets of IV steroid treatments that seemed to help a little. My vision has seemed to improved but still blurry out in the daylight and in stores or places with bright lights.The numbness is not as bad as it was before. My doctor suggested the IVIG infusion. I read up on it on the web. I'm a little scared. So if anyone has had the IVIG treatment, I would like to hear your input on it. Thanks in advance.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/6/2008 2:32 PM (GMT -7)   
Hey Sizzle

I can't give u any direct info on this treatment, but my best friend had it and has said she noticed more help over a span of time than immediately. It is not a guaranteed fix and not a quick fix, but i can help. The thing is that u may find some symptoms are residual and just going to be hanging around. Maybe not at their worst, but just letting u know they are still there. I"m sure others will be along soon to give u their input. Welcome to the board!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
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Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/6/2008 3:43 PM (GMT -7)   

Hi Sizzle, and welcome to the board.

 

I’m so sorry to hear of your recent diagnosis, and that you are having problems. I’m not sure how often she checks in, but there is a member of this board who gets IVIG regularly, so hopefully she will see your post. If you do a search for IVIG at the top of this page (search site) you will also find quite a few past threads about IVIG, some of them related to MS and some to other conditions.

 

Sunny


hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/15/2008 9:47 PM (GMT -7)   
I keep seeing the treatment IVIG mentioned.What is this treatment?Is it the same as the Solumedrol or is it a different type of IV for flare ups.Hockeymom

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/16/2008 11:33 AM (GMT -7)   
i am the ivig user... a good site for info is: http://www.cidpusa.org/P/ivig.htm

fought neuro for 2 years about ivig and lack of guarantees. tried copaxon & rebif, but had painful injection site reactions.

have gotten ivig since aug. 2006. agree w/info given above... not a quick fix, not magic drip... but i usually do feel better after my drip. had first one in doctor's office. after that, always had them at home. yes, you do continue to have a flare now and again, but great news is that per my neuro & mri, no progression of the disease. it treats ms as an autoimmune disease recent mri showed the one hot spot gone and no new lesions. i would suspect that my flares are less serious than they might be without ivig. have had changes in frequency of drip in keeping with changes in flares and symptoms. now have it twice a month for 2 days each. one down about ivig is that it takes about 3 hours each session. also, my veins began giving out so had to have a port installed near my shoulder. morning of drip, i take advil and allergy med. then i put novoderm cream and patch to partially numb port. nurse comes, installs port and i relax. port remains accessed so i just take pills on second day. on occasion i am a little sleepy after drip, but usually okay. one caution: be sure your insurance covers it... it's very expensive.

let me know if you have any questions...... linda

hockeymom96
New Member


Date Joined Nov 2008
Total Posts : 11
   Posted 11/16/2008 1:35 PM (GMT -7)   
Do you take this instead of another injection like rebif,copaxone,avonex etc?Hockeymom

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/16/2008 2:30 PM (GMT -7)   
yes... went right from rebif to ivig. only side effect is the passing drowsiness. i think it's worth doing a search on the internet. have not needed steroids since i'm on this, tho do have an occasional flare but minor.
linda

mom of ill child
New Member


Date Joined Nov 2008
Total Posts : 1
   Posted 11/22/2008 8:16 AM (GMT -7)   
My daughter has been ill since 10-07.
We had to end up taking her to another city to get help.She has ALL symptoms of ms but test kept coming back negative,now she is only 9 years old and we have history of ms in the family one being my mother.My daughter could not even open her eye lids blurred vision persistent migranes with vertigo nausea rightsided paralysis to the point where she can not even wiggle her right toes and she is now learning to write with her left hand because she was right handed.She had a very different kind of nystagmus in both eyes which is a syndrome called parinaud syndrome.She has abnormal tongue movements and her right arm and leg twitches and jerks.She also has early development starting at the age of 7.She has been going through IVIG treatments and I would suggest anyone who is recommended to go through the treatment to have it.She can open her eyes now and the nystagmus is getting better.She is stronger and moving around more nerves in her right arm are trying to regenerate but the right leg they believe is to damaged because of the length of her illness.Migranes and vertigo are better but still there.At one point she had lost 30 pounds in a matter of 2 months which now she has gained that weight back.It is a scary thing to go through and with anything there are side effects but in the long run I call it a miracle drug because what it has done for her,and still doing she has been going through treatments since 9-08 till present and who knows how many more.Good luck to anyone with health issues but once again I highly recommend anyone to try the treatment.

odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/22/2008 5:16 PM (GMT -7)   
Very glad that the ivig is helping your daughter! too many people dismiss it automatically because they don't know much about it. the treatment does help with certain conditions, including ms, but may not help everyone who takes it. as you said, your daughter still has some damage that will not be corrected, but in the long run, she and i are glad we tried it. linda
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