of course it varies from person to person… I kept going to dr’s outpatient, they would run a test, and then we would wait a few weeks for the results.. and then another test, and then wait.. it was SOOOO frustrating!!! Finally, one week, I started to really crash.. I couldn’t breathe.. My PFT’s were 70% and doing that test made me almost pass out.. I was in the hospital for a week and started IVIG Then…. It’s a frustrating process that’s for sure!!! Good luck!

so glad your feeling better!!!! That’s great! how many days post infusion is this for you?? I remember my 2nd round of infusions.. i was so depressed that it wasnt’ going to work on the third day.. and then when I woke up that 4th morning reached to grab my phone, and for the first time in months I could actually grab it not floppy fingered.. I went to flip the light switch on, grab toilet paper, open a door.. for the first time in MONTHS i could do this- I think I smiled NON STOP (which I hadn’t been able to even smile/ or make a cry face either) for months. anyhow.. so day 4 I notice improvement.. and i feel it wearing off by day 10-14.. seems all too short lived!!

As far as the wine goes – Man, I hear ya!!! before I was diagnosed I had a glass of wine (as I have done occasionally for a while… and it made me feel AWFUL!! heart rate was in the 140’s the next day, felt like I was going to kill over.. now that things seem more controlled I have a glass every 4 months maybe, and it doesn’t have that effect.. Glad your feeling better!

I meant to say.. I have been gluten free x 2 years, as with my GI symptoms , family history of autoimmune and intestinal issues. they thought maybe I had celiac.. also it has neuro complications as well.. I was and am willing to do anything to feel and be better.. i think it may help, but who knows for sure!

sorry to hear you have to join the club!!! I have had aseptic meningitis with IVIG (two times pretty badly, third time mildly).. I was in the hospital inpatient when I crashed, and they gave me IVIG for the first time.. they ran it at a rate or 210.. the 2nd night of the loading dose I awoke from my benadryl coma with a Pounding headache.. temp of 103, and walking on the floor hurt my spine so badly.. I coudlnt’ turn my neck at all.. I felt like I had the flu x 10! now, I didnt’ say anything to the docs, as I needed the IVIG and didn’t want them to stop it! I got IV toradol and zofran and just was miserable, but hopeful about the IVIG working.. they were doing a lumbar puncture for diagnostic purposes of my weakness and then came in and told me I had meningitis (ha.. I knew that, but now they did too- it was confirmed, I had 100’s of Wbc’s in my csf).. anyhow..
point being – I have learned that my rate is crucial, I can’t go over 100ml/hr.. I drink tons of water.. and I’m fine now.. my body has since adapted (i couldn’t go over a rate of 70 for months).. good news is the 2nd round of IVIG I felt almost normal, it seemed to “cure” me.. but since it seems less effective, though still works..

good luck! keep us updated!

ahhhh.. same thing happened to me!! wrote a long post and it got deleted …. I am SOOOO sorry you are going through all of this.. I remember just waiting for IVIG.. I was waiting for ANY treatment, and it seemed like the dr’s didnt’ care, ore didn’t realize just how fast i was declining.. I felt like I was going to wither away – i coudln’t take care of my kids, work, hardly eat, you name it … it was devastating..

I also had that heavy concrete in my shoes and hands.. it was so awful.. I”m glad they aren’t making you get the nerve biopsy, but am shocked especially if your test clearly show CIDP why insurance isnt’ approving it yet?  Did the prednisone seem to make things way worse? Have they talked about other immunosuppression/cellcelpt etc?    So sorry you are going through this.. I really feel for you.. I’ve been there

sorry to hear what you have been going through… Im not sure if the fact that your ankles are strong that would affect your nerve biopsy – I would think it would though.. Did your EMG/NCV show demylenation/typical CIDP??    I hear the results of the nerve biopsy can be patchy- I would think if your ankles aren’t weak it would increase the chances of the biopsy being normal dispite you having a disease process going on.. but who knows!?!   They did an epidermal nerve biopsy on me (it is a less invasive skin biopsy).. I guess it’s a new way of doing it. .. that’s what helped them with my diagnosis.. it was very minimally invasive – they jsut take a punch biopsy of three areas (ankle, calf and thigh).. mine came back significantly abnormal.. I think it was then that my neurologist said – huh, something weird is in fact going on- im not just totally crazy! 🙂

I get IVIG.. I tried only three days of prednisone, they started me out at 60mg, which was just too much for me – other people on here might be good to ask if they started out at lower doses and worked up, or higher doses and tapererd down.. The 60mg was too much during an exacerbation and I felt it worsened me.. I wish I would have tried lower and worked up. Otherwise, I hear great things about it working great, especially along with an immunosuppressant like cellcept or immuran . Good luck!

Steve – you sound very much like myself – symptoms x aobut 4 years (twitching and foot a little weak, but never thought much of it) and then after having my son 2 years ago and having a medical procedure go bad I went downhill FAST!! I had GI issues as well – they didn’t call it IBS as I lost so much weight with it and that is an exclusion criteria for IBS.. it was suspected possible crohns or something to that effect.. however interestingly I had a postive CMV titer a few weeks into my symptoms (which it was negative at the end of my pregnancies).   Anyhow.. i declined quickly – swallowing and speech were involved, as were my eyelids and just droopy face – droopy everything!   I crashed and ended up admitted and started with IVIG..   It was a miracle, as after the 2nd round I was 99%- i couldn’t stop smiling for the 2 weeks it worked until it started wearing off (I was 30 years old, but the first dr told me I might have ALS.. so I was a wreck)…..      All my emg’s were negative, except one NCV showed demylenation of my right knee (which is where my first symptoms started)..

I was a big risk for lyme as I hiked in new england for years and had many tick bites .. it was always negative however.. I am 2 years into all of this and doing fairly well.. I have breathing difficulties at times, weakness all over , atrophy all over.. but I am doing SOOO Much better than i was 2 years ago, its a miracle!  I am hoping IVIG has the same effect for you!!!   (oh and I have never had the classic CIDP findings on testing).