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...

First - yea on the ivig and your "help" - they did the same for me and I hope to start up in a few weeks!

Sorry you are having more symtoms though.... couple of thoughts - starting up the IVIG again may trigger more symtoms at first as far as feeling fluish, headaches, etc... until your body gets used to it again... some people see radical change - others its subtle but useful - more energy - better balance- ability to think clearer - strength - less numbess/pain/tingling etc from PN...... your doc will probably do strength tests, bloodwork, etc to be able to show you are benefiting.....

ALso, total change from IVIG but possible symtom cause - there is a very strong form of the flu this year - type A - and it lasts for weeks and weeks - fever - headache - stomach - etc... one thinks they are better and then it comes right back...... you could be fighiting with that right now too - and you need to listen to your body and rest to get over that.....

Sounds like you are dealing with so much - I'd try one thing at a time - the migraines, after watching someone suffer trememdously from them for days at a time - i know are devestating and can be completely debilitating on their own, and I hope they can help you with those..... when getting IVIG - I'm sure they are pre-medicating you for headaches - but if not - I'd be sure to really down the pain killer the doc prescribes before you begin them.... (and also in regards to headaches, they have done brain MRI right? - if not - I'd insist - and there are neruos that specialize just in headaches - and may be worth a visit to)

Take care

done your homework! And, I bet, worked super hard to get to this point....

OK here's the basics I'd posted ages ago...I believe you've read them all, but refreshers never hurt...
http://neurotalk.psychcentral.com/sh...highlight=IVIG

I do hope that Melody and Roxie can provide the threads discussing their intro's into IG-land....Mel's I believe was about Dec/Jan last year and forward. Roxies was spring sometime and forward. I must be going brain-dead or something in not finding them?
Kmeb gave you very good advice about reactions...These are very important things to watch out for...and as for reactions right off? Rarely...My last real reaction occurred half-way thru my second day in a hospital setting. I now have infusions at home....If you get to the hospital on your own steam...and are pre-medicated- it's a muzzy area where YOU are going to have to learn how well you cope after infusions! I really get the shivvers now, wondering HOW EVER did I get home intact?
Killer, migraine-like headaches and flu-like stuff -bone aches-[worse than with the PNetc.], some nausea and well a similar issue at the 'anterior' end do often happpen. Infusion rates can and do affect how much headache you can get...that's why your starter or 'loading' infusion is going to be looooonnnng! All of it mite be interesting at first? It gets very dull very fast. If you are in a hospital, bring a tote bag of comfy nibbles with you-I chose a banana or a fruit cup and some coffee or juice for after the bloodwork and like hook up. Also good reading materials-hospitals tend to have a TV but some folks in any given IG area may want to watch something you truly hate. Some folks can test your patience on this, I assure you. Mostly, folks b eing infused for a whole slew of reasons, usually after pre-meds and start up...just doze the time away.
As for IF/WHEN you will know and/or feel wonderful? Well, stats for CIDP and many other conditions indicate tht 40-60% of the patients 'respond' detail as to 'degree' is never articulated. It doesn't always kick in rite away tho. Remember that those supplemental anti-bodies are just that, and that they are probably going to have a sort of 'discussion' with your ill-behaving ones or something...That's why you'll be watched very closely at first. I felt better at the third day of my first four-day infusion sessions. Pain reduced about 30% and the ability to walk any distance well, wow! After it kicked in, I walked more in the next two days than I had walked in MONTHS! But, it all depends on the brand, the dose and what all you need and can tolerate. I have to say I just love my 'nanobots' going to work monthly! I would be one very growly camper if I didn't get them anymore for sure. Take/keep a note pad, and try to describe the changes You Think You feel, and filter out those most important to relay to your doc...Even little things like giong down a 1/2 notch in the pain level is truly something important... Hang in there and keep faith that all your hard work and the infusions will really help - 's! - j

since posting this more problems...

Late winter , fluctuating but progressive weakness esp legs, falls w/ injury {now dealing w/ fractured knee and neck/head injurys]
more neuro SX: intense burning, stabbing pain esp head; spasms, fasciculations
cold/heat intolerance; severe muscle aches, low grade fever w/ sweats/chills--feel like I'm burning up now yet my feet are cold. Bladder & sex dysfunctions. Chest pain w/ heart palps.
Persisting nausea w/ frequent vomiting & digestive issues --weight loss from not eating. and other problems-- inc. TBI (traumatic brain injury) affects.

are these related, what is wrong??? seems every trauma causes more problems, esp Pain ,which has been my big complaint, but now progressive weakness -- and fear of more falls--is scary.

my neuro still feels IG is THE treatmt for immune mediated polyneuropathys. my DX: CIDP [sensory variant] has been disputed by some Drs. When I was hospitalized after bad fall in April -- one neuro said after exam "you can't have CIDP"
more tests (i don't remember all [blame TBi] but after nerve testing was told i didn't have PN.
later, relayed this to DR B, my long time neuro who used to work at this local center, first wanted to know who did tests, that he'd would be contacting, then said "you have small fiber neuropathy." (first time hearing this--little info I've gleaned since did seem to address my situation, of pain & Sx that mimic MS, difficult to DX, skin punch biopsy best.

can anyone share more about small fiber neuropathy? I wasn't able to question DR B more in that brief phone call. he did reiterate his feelings (mostly negative) about this facility which my experiences confirm, and reason for long drive, out of state to see Dr B.

during that hospitalization,
another neuro there focused on NeuroMuscular disorders--myopathy; muscle biopsy was done--a BIG regret -- i wasn't expecting to have 3 inch incision in my thigh nor persisting spreading pain & Sx that look now like RSD.
Before results known, this neuro quit. problems getting records and more bad experiences at this center I wish i'd never been taken to by ambulance.
I did refuse to go after more recent fall (concern that my neck fractured outweighed by these experiences. later did have xrays which showed injury but no fracture) Vertigo , problem I've never had before also factor; along w/ weakness & pain may be causing more falls. (differnt than drop attacks)

my head is pounding now; writing is difficult , trying to address so many issues. Perhaps too much here, but what's going on....

I have appt w/ neuromuscular specialists at bigger city hospital --in July;
hope my records, test results available by then. Dr B said IF myopathy, treatmt IVIG...


IVIG treatmts stopped in April--some insurance issue I'm trying to understand & resolve
but wonder if worth another fight. past 6yrs problems getting & maintaining treatmt, IVIG has NOT been as hoped or expected. But seems did get worse when treatmts stopped in past .

I'm far worse now but don't know if NOT getting IG reason since most Sx & problems addressed began while I was getting IVIg. Perhaps 4 mths was not long enough to know. or I'm in that % of patients who don't respond to IG. other options??? suggestions???

many questions--hoping for answers--I feel overwhelmed as well as increasingly dysfunctional and depressed.

I was also recently informed that Botox, which was most promising treatmt, for migraines headaches/pain [ dx: cervical dystonia] denied. Hope DR will appeal; he feels IVIG is priority, but I feel all these issues need attention & resolve...asap
sorry for such a long rambling post.... hope makes sense

Sorry to hear you are having such a tough time....

I cant remember - what type of biopsy did they do on you and have you had the NCS/EMG"s etc for PN???? My PN is primarily full body sensory (the docs could clearly see this on my sural nerve biopsy - mostly large but also small fiber loss and axon degeneration) and others tests confirm it - but they have changed my diagnosis from CIPD to Heriditary Sensory Autonomic and Motor Neruopathy..... Components of automic of course involve your digestion and heart.... I have been on a liquid diet for years due to it - and recently had another cardiac workup that shows my heart is affected causing frequent svt's, etc, I get very faint, sob, dizzy, etc..... sometimes IVIG is used for heridiatary - if they can get approval for it ... but my IVIG has been stopped too - didnt show any type of long term improvement.... and your doctor has to be able to justify the treatment to your insurance to get it paid....

Have you seen a cardiologist and GI motility specialist? These could be issues contributing to your symtoms and all related....

Thats a bummer about them denying botox for migraines - have they had you try all the meds for it? If you arent responding to meds - I fight your insurance on that one.....

Hang in there

thanks for reply...
and sharing what's going on w/ you.... wish I could offer something more--prayers & good thoughts for BEST w/ all you're dealing with....

as for me, trying to hang in.....

yesterday woke w/ killer migraine-- resorted to ER, treatmt w/ IM Toradol--
which also helped some severe pains in other parts of body.
today migraine hangover; still, or always have that crazy burning --back of head/neck and sensitivity---hurts to put head on pillow, etc.
Botox (one treatmt) did help . I don't understand Medicare denying after initial approval, esp when improvement reported. I don't know if DR appealing
Last conversation was told he's more concerned w/ IVIG
Why can't they appeal both treatmts rather than prioritize one? actually I'd rather Botox get priority, w/ these migraines headaches so debilitaing. but....
Neuromuscular specialist that i have upcoming appt with, per info at website,
does Botox too. Hope this works --so many 'bad' experiences w/ DRs.


Yesterday my head was SO Hot--melted ice packs; today not so bad but do wonder why my head's so hot so often ; it feels like fever that drains energy --like flu .
Occassionally have low grade but most often temp is below normal.
its like my body's thermostat control broke. even in summer feet, hands cold.


re: your questions: Muscle biopsy was done--2 mths ago. Very painful & still is. that surgery created new nerve pains & SX--that look like RSD.

I haven't seen cardiologist for years; my sister [nurse] has been urging me to go to GI specialist, which I've put off. but seems will need to make appt.
I've been trying to not get involved w/ too many DRs at once and also have been "blaming" many SX , on affects of TBI's
I did go back to brain injury specialist (physiatrist rehab DR) He was concerned w/ fractures from falls. Thankfully my neck wasn't but knee is.
will be seeing Orthopedic Dr this week.

will update, if interested.

again thanks for reply & support. Means much to me, esp now.

I often am?
Let me be sure I've got this right....You have both something auto-immune and somethings resulting from TBI?
Well, each alone is enough to make a person scream in frustration for sure but both aren't fun when combined! You also seem to be a ping-pong ball between all medical factions too. I would sit down or talk long and hard w/the one doc you trust most and see if you can herd all these professionals onto some sort of co-ordinated page [an exercise in frustration, but IF doc A knows doc B {w/a bigger reputation} is 'watching,] you mite get better considerations. Also find an 'patient advocate' who can help you coordinate things at that hospital you seem to visit too often. Especially the KEY docs to be alerted that you are THERE again!?
How did a second neuro get to do the sural biopsy w/o the first neuro's approval? Wowsers that is stepping on toes and YOU need to get these two docs talking pronto! Many neuros [like that second one] often won't believe a CIDP diagnosis w/o that biopsy. Depends on how and where they got their neruo training..
Here is one set of insurance company's rules about IVIG:
http://www.aetna.com/cpb/medical/data/200_299/0206.html
I believe there are some stickies from a european medical assn that outline the diagnostics and all far better tho...
When does IVIG start to kick in? Well, for each of us is different and for some folks it can take 3-6 months for it to kick in. Variables depend on your immune #'s and your doses as well. It should be the prescribing neuro who has to do the 'insurance battles' for you now. Find out the staffers' names and just call them and say Thanks for helping me! now and then... Honey can go far...
The Sensory/Motor neuropathies and possible brain function issues all come into play in terms of your falling. This is a very serious issue. Don't go anywhere w/o canes/walker or in a wheelchair! As much as you would like to skip that aspect, falling is the worse option, isn't it?
If you've an immune neuropathy, your internal thermostat IS likely broken...those small fibres are the ones that get the rest of the vascular and lymph systems working to keep things warm/cool. I too have a sub-normal temp on average..when it's normal? I'm sick! You aren't crazy.
You have soo much going on! Don't give up...you've little choice but to keep on slogging. Who knows? YOu just mite get lucky with the next doc visit or test! I sure hope so!!'s - j

Pono - hope you are doing ok - and left you a PM

IVIG again "approved"-- infusions were to begin (resume??) again Tuesday.
but home nursing agency referrel went to, knows nothing of IVIG or ever heard of CIDP. and only have 1 part time IV trained nurse.
said they'd do IF i got a port (I can be a tricky start & have had problems--but none recently.)
Since muscle biopsy resulted in so many new problems w/ nerve, pain--I don't want any invasive procedure , surgery. --unless Lifethreatening (my neuro has also adivised)
All this made me very uncomfortable.
anyway, nurse agency also not comfortable so has passed on my case.

will see where this goes & when treatmts resume, how that goes....
DR B has increased dose to 40 g every 3 weeks, 3 hr drip....
perhaps this doasage increase will be beneficial.

Pain & weakness continue. I am using wheelchair -too many falls & injures -don't need more


DAHLEK.... will try to answer your questions -- the situation is complex; affects of TBI further complicate
and Yes, there's auto-immune components and more...

I've been so tired since trip to ortho & migraines. Not sleeping again --pain worse at nite .... challenging days....

Hi - congrats on getting the IVIG approved again! I'm sure a few of us will post - I had home IVIG for year and a half every week - an agency that did a lot of it - but the patient needs to be really on their toes too!!!!! I had printed out a file for myself about IVIG administration, etc.... and some of the nurses actualy asked for copies of the articles for themselves....!

Thats good the agency was up front and passed on your case - hopefully you will get a great nurse - it helps! I'm a tough stick too - I found that using a little microwave heating pad on my arm for about a minute before sticking make my veins really pop - and much easier to stab.... I'm happy that you are hoooked up with IG Living - they are super helpful and you can always e them with questions etc too! (even things like keeping your own log of ivig labels with lot numbers etc is important

Also, dont worry about using the wheelchair - if it helps you from getting hurt - thats whats most important - I try to hang on to walls and use walker or cane inside - but always use chair when out - just too much of risk... I fell out of the shower a while back and my head broke my fall - major and continuing damage to my jaw, teeth, etc... I let got just for a sec of my shower chair and thats all it took..... I find when out I can zip around when out and not worry about falling is a very good thing! And going down hill can be fun!

Hang in there - Dahlek knows quite a bite about IVIG - as others too -feel free to ask any questions...

Feel better