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Old 01-05-2008, 08:22 AM #1
pono pono is offline
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Join Date: May 2007
Posts: 270
15 yr Member
pono pono is offline
Member
 
Join Date: May 2007
Posts: 270
15 yr Member
Default IVIG --expectations??

resumed IVIG (thanks to those here who directed me to IG Living and NuFactor. I had my first infusion last week, will be getting every 3 weeks--30 g --for CIDP.

What I'm wondering is when, what can or should I expect??? I know we are all different, unique.... and may have other issues, problems which can complicate....
for me, TBI (Traumatic Brain injury) & PCs (Post concussive syndrome) and other chronic pain & neuro issues...

I have been getting more head & other injuries from frequent falls.... got [another] concussion few days before Xmas. I've been very sick...w/ severe headaches, nausea, vomiting, sleep disturbances and other known PCS symptoms--cognitive, emotional & other dysfunctions...

Before I get too OT or even forget my topic/question, I'm wondering when, if or how will know IG is helping?? this was an issue years ago --I wasn't responding to IVIG as DR had hoped --I'd heard many stories of "miracle" changes w/ use of IVIG.... for me, not that miracle but did get much worse when treatmts stopped .
my neuro pushed for resuming IVIG, but stated would have to "show" that it IG was helping for treatmts to continue. {insurance issues I don't want to go thru again ..... but if other issues (like head injuries, falls continue .... how can I show improvement??? my neuro doesn't or hasn't put much emphasis on my TBI 's or PCS that was Dx'd by others--he says chronic pain can manifest those same symptoms (which I do agree with But know TBI have done damage and are culprit for problems --I can't say which or what caused what... but wondering if too much emphasis is now on IVIG ....

this "issue"/question came up yesterday when home health nurse came to visit my father (she has been my nurse for years -does my infusions and is Wonderful} but when saw me . not doing well-- she seemed disappointed that IG hadn't "helped" me more..... (I was having what felt like a migraine w/ vomiting , photophobia, and other problems I "blame" on head injury and more frequent falls...)
I know from years of experience w/ TBI that it takes time & is a unique process, that can become worse w/ additional injury


I don't think CIDP is reason for drop attacks. Seizures were ruled out year ago, as was CHiari. I do have cervical/spine dis.
Head pain was Dx'd Occipital Neuralgia. Nerve blocks have helped this; now waiting to try Botox... perhpas if I can get this problem controlled ..... can focus on the other neuro issues, like CIDP...

another DX "complex migraine" [also called complicated or A-typical migraine has been addressed as the reason for these drop attacks. I've had few episodes clalled Hemiplegic migraines, which looked like a stroke or TIA .....
I've been trying various AED meds.... but haven't yet found any or combo that work well enuf to justify adverse or allergic reacations.


I could go on.. but I'm overwhelming self.... and pehaps others... w/ all this... I hope makes sense.... I'm trying to sort thru stuff, that I don't understand but am much at the affect of, as are others around me....

I like my neuro but not sure he's seeing or getting the whole picture (or perhpas I'm not.... he may be right ... and I just need to get the right treatments and give them some time to work/ help...
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