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  • April 14, 2013 at 10:45 pm

    i wish the emg/ncv was less torturous for me. When they have me flex my feet or do anything to engage the thigh muscles while the needle is in that muscle, it literally cramps my entire thigh muscle into the worst charlie horse cramp, which pulses, tightens on it’s own, the muscle stays hard and shakes for up to a week after the test.  Im already dreading  having the test in chicago next month—i can’t even describe the pain, its not nerve pain, but more in the muscle, i guess??

    Sounds like you have a pretty good exercise/pt regiman—hopefully it will bring some more nerve healing for you.


    April 12, 2013 at 10:00 pm

    that’s good news Ann.  I have never had an emg/ncv sitting up, they have always had me lie down.   I hate that test—-it’s torture. I will have one when I go to Northwestern in May–and I’m already dreading it!!  Will you have any more rituxin, or are you done with it?


    April 10, 2013 at 3:28 am

    there can be nerve pain as nerves are regenerating—is she feeling an increase in strength with the pain.

    April 5, 2013 at 8:56 pm

    the pro’s for the sct (of coarse this is all my opinion from what i have read) is that once you have it done you have a whole new immune system. they deplete your b cells with rituxin and then your t cells with cytoxin. so basically your immune system is brought down to 0  and then “restarted”  kind of like rebooting your computer–lol.  so imo the pro would be that as long as the diagnosis is correct for cidp then it would work because you would have a whole new immune system which is no longer attacking you.  the cons are its still a clinical trial, insurance coverage may be an issue, the only place doing it is northwestern in chicago–so can’t have it locally, would need to be away from home/family for 6-8 weeks.  a big con for me, is work, i own a small business in the mental health field and i cant just close down as my residents require 24/7 care.

    i just am taking it one step at a time, once i go out to chicago next month, if i get accepted then i will start on the insurance issue, then if i win that battle i can work out the work issue—–

    there is a face book page called cidp-sct that has tons of sct info. i have not joined the site because it is an open site, which means everything you post will go all over your fb page for your entire friend list to read.   i am a pretty private person, and although my family and close friends know what i am dealing with, im not ready for it to be that public.

    do you have symptoms anywhere else other than what you listed? on my emg/ncv i only show damage from the knees down. I have recently noticed that when i wake from sleeping my hands sometimes feel numb, they come aroung after i move around, but it worries me, because in the beginning my feet used to do that, then come back, and now they just stay numb.  i was diagnosed in june of 2009, so am going on 4 years without finding a treatment that works—frustrating.

    when you say dartmouth-hitchcock hosp. are you referring to the one in VT?   that isnt too far from me, 3hours, i have never been there as a patient, but have heard it is a very good place.      you have me curious on the anti-inflammatory diet, i plan to check it out.  i would prefer to not have any foreign medication/chemo in me either–i swear once i get this cidp fixed i plan to stay as far away from medical professionals as i can.                                           Lori

    April 4, 2013 at 9:19 pm

    i haven’t tried the anti-inflammatory diet–is it easy to follow?  Most of my damage from the cidp is my feet, ankles and calves. poor balance, drop feet and walking difficulty.  yes, the process of finding a treatment that works is frustrating, mainly the long waiting period after each to see if it will work. I got excited that the rituxin was going to work, i got many sensory changes in the beginning, pain where i usually had numbness, itching, burning and cramping–i know normally these don’t sound good–but they are when they replace numbness.

    I never really got any significant strength increase  though. so between that and the insurance company balking at it Im now back on ivig until the next treatment is decided.  If i dont get accepted for sct then i hope the new dr i just found will start me on high dose cytoxin. its one of his specialties, which is why i switched to him.

    I think the downfall for rituxin is that it targets b cells, but i dont think there is any simple way to test if the cidp is from b or t cells. with the stem cell tranplant they deplete both your b and your t cells.  so my hope is that wherever this crap is coming from—-as long as they are sure it is coming from my immune system, the sct should do the trick.     When are you due again for another rituxin treatment?  My dr told me when i was doing it that i should see effect in a few months, then i read studies on it where some didnt see improvement until after 6 months.

    April 4, 2013 at 12:53 am

    Hi Phoenix,  I felt like the rituxin was working in the beginning. I was doing only that, no ivig once i had rituxin.  I had two 1000 mg doses, which the dr said should last 6-9 months.  After 5 months I began feeling like I was getting worse. Still fighting with my insurance company regarding the rituxin , so another dose was not an option for me.  I had to go back on ivig in Jauuary to keep from getting worse. I have applied for stem cell tranplant and will be going to chicago in May to see if i qualify.

    I did not get a significant response from the rituxin and have not from ivig, plasma xc or prednisone.  my dx is preety confirmed from numerous tests at mayo—dont know why nothing seems to be working for me.

    February 22, 2013 at 2:45 pm


    My infusion rate is 240 for ivig. I take 25 mg of benedryl and 2 tylenol prior.  I found the best way for me to avoid a headache is caffeine.  I normally drink  a 20 oz coffee daily, on the day I have ivig I drink 2 (40 oz)   really helps with avoiding a headache.  I also drink a lot of water.

    I’m not sure if it’s just a coincidence or not, but i also find that I am more prone to a headache if my infusion is during my  monthly menstrual cycle.

    Mark gave a good description of the prednisone.  When i tried prednisone I was on the daily dose (60 mg) every morning.  I noticed the difference on the fourth dose/day.  I did not suffer longterm health issues as I was only on it for two months.  I did have trouble sleeping, irritibility ,weight loss, increase in leg weakness.

    Best of luck in whichever treatment you end up trying.

    February 21, 2013 at 11:37 pm

    jane—you shouldn’t  have to have a nerve biopsy just for your insurance company to cover your treatment, but if your Dr suggests it’s a good idea or for some reason you do need one, just wanted to let you know I did have it done at the Mayo in MN.  They used my sural nerve as my feet are the weakest.  It really was not that bad, I had it done under local anesthesia, was able to walk on it immediately after.  There was some nerve pain in the area after for a while, but not bad.

    I know everyone’s experience with it is different. I opted to go through with it because I was already in MN, figured  Mayo would be one of the best places to do it.  I actually had less problems with the nerve biopsy than i had with the lumbar puncture.

    I do have an atypical case where it was suggested to help with diagnosis.

    sorry i can’t help you much with your questions on relapse,recovery etc. Im a little over three years in with this diagnosis. Have tried prednisone, ivig, plasma x/c, rituxin and now am currently back on ivig.   The ivig seems to slow down the progression, but nothing has helped me gain back strength or sensory loss  so far.   it is discouraging and can take time to find treatment that works.

    I just recently started with a new neurologist I found online listed as a cidp center of excellence (st elizabeths in Boston).  I also got accepted to Chicago for the 3 day consult to see if i am a candidate for a stem cell transplant.   Wish i had applied for this sooner, i kept hoping the other treatments were going to work……oh well hindsight.

    It is a hard disease to deal with and normal to wish for your old life back—-I go through this a lot too.  Seems like most of us that have this were avid exercisers and led very active busy lives prior.    Best of luck in getting the ivig approved by your ins co.  im still in the appeal process for the one set of  rituxin infusions i received back in June for $17,000 that they did not deny until after i received the infusion.   insurance companies are just so joyous to deal with!!!

    February 15, 2013 at 10:46 pm

    If i were you i would challenge the insurance company.  I have found that if you put them on the spot, that it’s very unlikely the people sitting in on your appeal hardly have any knowledge or history dealing with cidp.

    Im in the second level appeal process right now with anthem BCBS.   I had to ask 3x before they would state their experience with the disease when I requested their background so it would be on file—since the interviews are recorded.  2 0f the 3 people at my appeal did not even know what cidp was or even what the initials stood for, the one neurologist on the board had very limited knowledge/experience.   I am quite confident that i won this appeal—currently waiting for their answer.

    The insurance companies count on us being uninformed, accepting their decisions and living with it, so do your research, stand up to them and put them on the spot.   Just the fact that they are requesting a nerve biopsy shows how behind they are on their knowledge of cidp.  Nerve biopys are not routinely done anymore.

    February 15, 2013 at 12:29 am

    I hear you—I was very athletic prior to this too.  It is very stressful having to “think” about walking, something that used to just be natural.

    If your Dr had medical reasons for you to NOT try prednisone–(-if this is  even why your ins. company isnt covering ivig??) then you should be able to go straight to ivig without trying it.  Are you diabetic or pre-diabetic, that might be why your dr doesn’t want to try it.

    Did your insurance company state on the denial why they are denying ivig? there should be a code on the bottom of the letter that you can look to see the reason for the denial.
    You stated above “after your b-12 levels came back up” were they low when you were originally tested? did you do b-12 shots?  Ive been taking sub-lingual b-12 since being diagnosed with cidp. My level wasnt below normal when i was diagnosed, but it was on the lower end of the recommended levels.  since taking the sub-lingual tabs my level has been high, over the normal levels.

    February 14, 2013 at 4:14 am

    are you sure that your diagnosis was written properly on the insurance paperwork? I ran into difficulty with Anthem BCBS because a Dr had written peripheral neuropathy instead of cidp.

    You always have the option of appealing their decision not to cover, each state probably has a different appeal process, where I live, the 3rd level appeal involves the state insurance board.  I have had success at that level, where the state overturned BCBS’s decision and they were required to pay.

    Possibly the insurance company required a less expensive treatment be tried prior to ivig —-meaning prednisone.

    They should have put a code on the denial letter that showed WHY they denied the treatment.

    good luck with it, dealing with insurance companies can be stressful.

    January 26, 2013 at 1:36 am

    sounds like you are staying quite positive 🙂  Seems like a lot of cidp’s are labeled “atypical”  mine was too.   I had the cental cath in my neck for P/E—–that was joyous!!   What a relief though when they finally take it out.   Lori

    January 26, 2013 at 1:19 am

    just wanted to conclude this post in case future readers are looking for info on Dr Gorson. I met with him yesterday. He was very knowledgeable in cidp,  I would have to say even more so than  Dr Dyck was when I was at Mayo.

    His bedside manner was excellent, he took the time to answer all of my questions.  He had read all of my info before seeing me, and was very knowledgeable of all I had done so far. He did not put me through a battery of more senseless testing.  most importantly, I left  with a treatment plan that made sense and a follow up appt in 3 months.

    Very pleased, for anyone looking in the MA area, I would recommend him. Plus St Elizabeths is listed in the cidp centers of excellency.

    January 23, 2013 at 3:36 am

    hi ann—sorry you didnt have better results with the rituxin.

    I am hoping to be posting another treatment again soon—if Dr Gorson has a treatment plan, or if i get accepted for the stem cell tranplant.   Either way, i havent given up on beating this crappy disease yet!!   keep us posted on how you are doing.

    January 23, 2013 at 3:21 am

    that sounds like a pretty good schedule—-do you live close to chicago, or is it a long trip for you?

    My job is not physically demanding either, its a small business that i own and operate.  It involves care for people, so i cant just shut it down to go away, plus without my job, i wouldnt have my insurance.    Such a mess…..getting this disease can really throw a wrench in life.

    But—i will make it work, if it will stop this cidp then it will be worth it.  I have anthem blue cross for insurance–a ppo, not sure how they will be about this whole thing.

    yes i have been on a roller coaster ride with the ivig too, it has never really helped me regain any strength–only slowed down the progression.   called back today hoping to reach Paula to see what Dr Burts questions were, but only got the answering machine—-will try again tomorrow.  must be a busy place.