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