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  • October 4, 2013 at 8:00 am

    Thanks yall!! It’s really the strangest thing.. the area on the outside of my left ankle/lower leg that used to be so sensitive now seems resolved.. though It’s strange, but i can’t tell if i’m more numb, or less numb or the same since it resolved.. the one on my hand is healing and now the bottom of my other foot is bothering me- it’s really so odd!!! Stevemckean- I get the shocks, especially when I’m going into an exacerbation.. I remember the ones down my back (not typical sciatica, something very different).. in the beginning and after my first big exacerbation

    Bill- oh the itching!!! I have been having a tough time with that recently!!! I can scratch and scratch till I bleed (literally), but it doesn’t seem to satisfy the itch! it’s like my skin is numb, but the itch nerve is fully intact… it’s maddening! Benadryl doesn’t seem to help.. except it will knock me out so I dont’ feel it anymore!

    October 4, 2013 at 7:54 am

    so glad to hear things are going well!!!! Thanks for the update and hope things continue to just get better and better!

    October 2, 2013 at 2:41 am

    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!

    June 18, 2013 at 3:06 am

    THank yall so much – I have had “shocks” since the beginning.. where they stop me in my tracks.. but the zinger sensation with a slight touch is new and weird!!!

    I have had the water droplet sensation all along as well, but have another new symptom – of warm/hot water being poured down a nerve.. it’s the strangest thing.. I’ll just be sitting there and almost jump due to the hot water sensation- yall have this?? with a questionable diagnosis, i’m always curious if others have similar symptoms as myself!! Thanks again!!!

    May 28, 2013 at 2:03 am

    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!

    May 26, 2013 at 2:58 am

    Oh yes.. that is very familiar.. I feel like every single time I get IVIG my brain is fried for a few days afterwards.. I have a harder time with everything – mentation wise. And the three times I have had meningitis my brain feels extra fried.. I have told my husband on numerous occasions – I think my IQ drops a few points every round of IVIG.. but hey.. if it works!

    Are you feeling better? Do you usually have to take something to sleep? I do.. I went three months after the inital attack of onset of this thing and I never slept well for over three months, I was so exhausted I would pass out initially and then wake up minutes/seconds later with my limbs all tingly and asleep feeling (like you have to shake them awake).. I take lyrica now.. it was great to just sleep semi normally (I don’t feel like I breathe deeply at night – been that way since this started).. but otherwise if I cut back on the lyrica, I wake up every few minutes all night having to shake my limbs awake ahhh!

    HOpe your doing well!

    May 24, 2013 at 4:20 am

    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!

    May 24, 2013 at 4:05 am

    hello, so sorry to hear of your troubles.. I am negative for CIDP workup as far as the EMG/NCV.. I was 30 years old when I developed symptoms, and now about to turn 33.. the first dr I saw told me he thought it was ALS (i was a new mom of 2 kids under 2 years old, talk about freaked out)..
    once he did the emg/ncv, they said defintely not ALS.. i did have one area of demylenation at that time on the knee .. esp with the GI symptoms and everything else I had associated with it.. I continued to worsen with all limbs affected – swallowing and speech.. everything! I ended up at the ALS university clinic here.. normal emg/ncv.. they say as bad as my weakness and symptoms were ALS wound show up at that point on emg.. anyhow, they did do a skin punch biopsy (epidermal nerve biopsy).. it came back very abnormal – dx a non length dependent neuropathy.. have they tried that with you? are you at a major university neuromuscular clinic?
    I am on IVIG, as I crashed, coudlnt’ breathe and my PFT’s were low.. almost 2 years ago now.. I have some progression in some areas and am way better in most with the IVIG>. it’s scary when you dont’ have control over your body, no one knows why, and you don’t know what your future holds- ESPEcIALLY when something like ALS has been brought up.. MY thoughts are with you, It’s not easy!

    May 24, 2013 at 3:56 am

    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!

    May 24, 2013 at 3:49 am

    Hi Steve, glad to hear that whatever you have is slow progressing, that’s great news! I will feel like that at times, and then I’ll have an exacerbation and it scares me!!! My neuro isn’t really trying to figure out what I have anymore, which really frustrates me.. as maybe there is a better treatment? I Havne’t breathed well in my sleep since this all started, so I have a sleep study coming up.. I used to have horrible swallowing issues, but those are thankfully better, though not normal.

    I don’t know what triggered it – many of the drs question if it was post viral? I had hand foot mouth virus (coxsachie) right before the IUD perforation fun.. with coxsachie – i had awful muscle aches – fever of 103.6, it hurt down my esophagus (all the same places I have issues with now).. but I also almost got intubated with my epidural during my c section a few weeks before that, and was paralyzed in the same distribution of my symptoms now – so who knows!!

    Prednisone really helps so many people, I only tried it once, and the dr started me on 60mg (as opposed to starting low and going up).. if felt like I was going to kill over, I did 3 days of it and coudln’t handle it anymore – I was WAAAY weaker.. I want to be the best I can be, but at times I just also feel like I settle for not getting a lot worse, as so many of the treatments have risks.. I’m not ready to risk immunosuppressants yet.. so I guess it just depends how intolerable your symptoms seem

    I hear ya with the mind — I seem to have a hard time the day after IVIG.. I get anxiety, scared etc about the whole situation.. and just not knowing.. looking at my kids and not knowing if I’ll be here for them when they are older.. Guess it’s all out of our control, but it’s still scary!

    March 21, 2013 at 1:33 am

    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

    March 21, 2013 at 1:14 am

    Thanks Bill!   So, funny you mention that about the D5/saline issue.. I noticed at my infusion on monday that they just hooked the saline right up to my iv after my ivig.. I realized then that they hadn’t used D5 to flush the past several infusions.. I asked about it, and they said that just a few months back it came out that it was now ok/compatible to use saline with the gammunex and you dn’t have to flush with D5 in between.. I wasn’t sure if i should believe this or not, as I don’t have a ton of faith in the infusion people from past experience, so wasn’t sure if they were just telling me that due to htem forgetting- have you heard anything like that – that the compatability has now been disproven?

    March 20, 2013 at 3:21 pm

    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!

    March 20, 2013 at 3:10 pm

    Thanks so much!!! I will have them slow it down.. How much saline do you get after the infusion?? I used to get 150 I believe, but due to the infusion taking so long, we have cut it back to 50-75 in the past several infusions.. I wonder if that has anything to do with it?? They said I could cut it out completely, but I feel like it washing out my veins is a good thing!

    March 15, 2013 at 3:02 am

    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).