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

thanks (again)

hoping this works ; in past 6 yr of getting IG--when/as insurance approved--I culdn't honestly report improvements. my neuro still feels IVIG is THE treatmt. Dx: CIDP--has been questioned by others--who may not know as much about conditions-- Dr B calls auto-immune mediated polyneuropathies- Sensory-
"variants"-- challenge 'clear' DX as do overlapping and concurring conditions.


will see what neuromuscular specialist says at July appt. meanwhile, trying to hang in --using wheelchair , when/as can--when go out but in home, accessibility & safety issues, esp. Bathroom. I also had fall like U; so sorry. Head injurys can be devastating & pervasive, w/ visible & "invisible" complications
but any trauma seems to cause more problems.
Muscle biopsy resulted in problems & Sx that look like RSD/CRPS
Knee injury also complicated--fracture, deep brusing & edema in bone--more reasons for using wheelchair as well as new & worsening SX-- esp. progressive weakness in legs . Preventing more falls & injuries is imperative.


thanks for advice and tip about heat pad; will try-- hope will get a good nurse too
I will ask more questions --about IVIG , etc. Trying to learn all I can.
answers, advice, support & other info much appreciated

wishing ALL the Best

I understand well. I've beautiful pop-up veins UNTIL the preverbial catheter comes near me! Then they shrink up and roll around. My home IV nurse is considering using 'emla' creams to get those things in! Getting a line in on the second or third try is a GOOD THING! These days....Sigh.
http://www.drugs.com/cdi/emla-cream.html
This is often used by cancer patients with success for their chemo and other infusions.
I would consider a port myself, when I next see my neuro I am going to ask about it. It's supposed to be a quick in/out procedure done using a local...and be sore for a few days, then usable. It would be sooo much easier than things are now. And I'm pretty good about it, but... you know.
I believe Roxie got one [a port] not too long ago and said it helped. I hope she chimes in soon.

I too, have gone thru 'other docs' questioning one doc's diagnoses.....I feel often that it is either politics[medical style] or philosophical differences that come into play with those opinions.... Thing is to get copies of all those key tests and biopsies and LEARN as much as you can asorb about the tests ... then the results, for yourself ... then follow your own instincts in the whole mess. Have you talked to your IG prescribing doc about trying the 'sub-cutaneous' types of infusions? That mite be an option that's easier all around for all if you can find knowledgeable nurses to start you. While some/most insurers aren't covering it, many ig suppliers are and there mite be hope/help there thru your doc. Hey! At this point, never hurts to ask! What's to lose at this point?

I gotta ask about the RSD CRPS I didn't think biopsies could point to such a diagnosis...it's either nerve damage or NOT... IF there is nerve damage, sensory or muscular, then it's either toxin caused or hereditary, maybe both...Where are they getting that from?
Maybe someone like Cycleops could come back on board and help with some 'clues'.

As for a wheelchair? Yes, chairs and houses just weren't made for each other! My first knee injury I SHOULD have had one, I wish I had? My second, well, there was a real 'art' to getting into some doors... Did not go into the bathroom and that was one VERY LONG five feet from door to key places! Then back? Think I hate is the kitchen counter and stove are at NOSE level! It's irksome.

The edema and bruising? You must've done a really good bonk! The one I had before I'd PN? They had to wait 2 months for the swelling to go down before going in and exploring! I had swelling and bruising migrate down to the ankle and hang around for about 4 months more afterwards. The only thing I found that helped was a lite massage UPWARDS from the foot to the knee to try and help get some of that 'juice' moving out of the affected areas.

As for being 'chair bound'? Ask your docs for once a week home PT...the kind where they give you exercises YOU can do on your own at your own pace to regain, build strength. Things such as a theraband, marbles and a tennis ball can be VERY useful with therapy guidance. Then you could progress to more 'exciting' things, maybe?

Keep hope that things will get 'there' wherever 'there' is!

Hugs and hope always! -s - j