Stuck…no change.

    • Anonymous
      November 6, 2009 at 10:27 am

      Hi all. I havent posted in a while…

      I am getting ivig every week now…40grams. I am on my fourth week and we’re doing this thru December. When I went to the Dr, I wanted to go from every four weeks to every six and he shocked me with doing it WEEKLY.

      My problem is this: I dont notice any change at all. At the dr, he said my symptoms were just a bit worse than the last visit 6mos prior…and at that visit, they were just a bit worse than the time before that.
      So, two appts, worse than the time before.

      I am still having a hard time walking…mostly after being at work all day. I have a desk job but am under massive stress filling in for someone else for the last four weeks. No need to tell my boss I cant handle stress…they wont care. I cant take time off b/c I dont get paid and I wont use my vacation. Saving it for Christmas. Besides, I cant take off for anything other than my ivig treatments b/c I’m the backup for someone else that is off.

      My right foot has gotten worse..the toes dont move at all. The left..the first one to go…the big toe now just hangs.

      I have vibration that is going up my right leg all the way to the groin. What is that all about ?

      The fatigue is incredible ! I do ok in the evening at home…but in the mornings, I cant get out of bed and am late almost everyday to work. I could sleep the entire day if I was able.

      So…I notice no improvement with the ivig. My insurance out of pocket has increased substantially for the new year. I dont know what I’m gonna do.

      thanks for listening…hope all is well.


    • Anonymous
      November 6, 2009 at 10:59 am

      [FONT=”Arial Narrow”][SIZE=”2″][COLOR=”Sienna”]Stacey, is it time, perhaps, to opt for an early retirement?

      I know that keeping active and busy helps us, but there comes a time when the activity and busy stuff needs to be adjusted to what’s physically feasible.

      Pushing too hard isn’t helping. Probably hurting?

      Anyway, I wish you well … absolutely!!


    • Anonymous
      November 6, 2009 at 1:16 pm

      It sounds to me like you probably have the slow progressive form of CIDP. It is that precentage of people who don’t go downhill rapidly, but just continue to slowly get worse over the years. Dick S has this form, hopefully he will respond to your post. IVIG doesn’t seem to work for this form, it works best on those who have the relapsing / remitting form of this illness. It would probably be easier & cheaper to just take one of the immunosuppressants, such as Imuran, cytoxan, Cell-cept or Cyclosporin? My toes haven’t moved a bit (nor my ankles) in 7 1/2 years; strange how it becomes the new norm?

    • Anonymous
      November 6, 2009 at 1:48 pm

      You sound so much like my daughter. IVIG doesn’t work. They weaned her off everything in August because they really feel like it is CMT. She has noticed in last few months that her big toe on her right foot is what she calls floppy. It hangs down lower than the other toes. She still has feeling in it though. She had an MRI done and the tendon is okay. The doctor is going to get her in for an appointment soon because we had weaned her off her medications. Otherwise, she doesn’t think she feels any worse than when she was on the IVIG. Please be careful Stacey. My daughter trips over her floppy big toe a lot and it scares me. She does wear her AFOs faithfully, it is when she is at home at night and takes her shoes off.

    • Anonymous
      November 6, 2009 at 2:02 pm

      Pam, what exactly are the immunosuppresants ? Pills, iv ?

      I’m just mad. I am very greatful to be as mobile as I am and all the things I can do, but dammit ! I’m getting slower.

      I’ve felt for a very long time that I have slow progressive b/c I’ve done ivig for three years…never had a relapse…never gotten better. The Dr thinks the ivig is keeping things “in check”. Obviously not.

      I’ll mention this to him at the next appt. I wish I had Alice’s dr !


    • Anonymous
      November 6, 2009 at 5:45 pm

      Did you get a loading dose after the dr noticed your decline?

      You wouldn’t see any difference in the weekly IVIG’s if you didn’t load yourself first. The load is an influx of good antibodies to really go at the bad stuff. Then the weekly IVIG’s would be to maintain what the load started.

      Basically you aren’t going to get the appropriate benefits of IVIG if you aren’t getting the proper protocol.


    • Anonymous
      November 7, 2009 at 7:26 am

      Have they ever ruled out CMT for you? I would agree that if you are not something else than you must be chronic progressive I think they call it. The ivig weekly sounds like a good try. If at the end of this you are not a lot better, I would say maybe you need to go another route. Have you ever been checked for lymes? If only we had Dr. House! Ha

    • Anonymous
      November 7, 2009 at 1:18 pm

      I am sorry things are going the wrong way. if you are like me then work is the only thing that keeps your mind off of things. I am new to the notian of budgeting energy because its expendature is cumulative. I am also sorry your work doesnt appreciate the levity of your situation. that is one of the many burdens of having such a rare illness.

    • Anonymous
      November 8, 2009 at 12:03 am

      Dr said a “loading dose” isnt necessary as I’ve been getting ivig regularly for …well, three years. At first, when first diagnosed, I had three different loads over five days. Even then, I wasnt “better”.

      My prob is and remains…the damage that’s done…isnt corrected by the treatments I’m getting. Is it keeping me from further damage ? Obviously not, b/c if so, wouldnt I only have just the dead toes on the first foot affected ?
      IF the IVG was working, would this have spread to the other foot so badly, gone up both legs, hit my hands and forearms, and now the vibrating in my upper thigh ? And what does this vibrating really mean ? I could wake up and my leg is like my foot ?? Really, what should the IVIG be doing for me ?

      Fatigue. I fantasize about sleeping …I’ll be at work and all I can think about sometimes is how nice it would be to go home and just “butt” the couch or take a nap, or go to bed early. It’s often the first thought I have when I wake up in the morning. I told you I’m late for work everyday almost…that’s the truth. I set my alarm an hour earlier so I can hit snooze and convince myself that I need to get up…that I’ve got to get up. Fantasy…b/c it’s no way a reality for me.
      I’m tired…and not the kind of tired I can explain…not the kind of tired when someone healthy says, “oh, I know…I’m so tired too”. Um, no…they dont know this tired. Tired is cement filled legs that feel like they weigh two hundred pounds a piece. Tired is wondering if your gonna make that last step up the stairs with a laundry basket in your hands as you lean on the wall to make it up….or down.

      well…dont mean to carry on here…but as for a loading dose ? I dont see him doing that. He’s “flooding” me now with the weekly doses.

      It was a beautiful day here in Omaha, Nebraska. Shorts and t-shirt weather. Got some yard work done…worked two hours…went to Connor’s basketball game…have my great niece over for a sleepover and we watched our Huskers beat Oklahoma. Yep, a good day. 🙂

      I know I have slow progressive. Thank GOD, it’s slow. I dont think about the future anymore…not the future of my CIDP. It’s too scarey for me to think about.

      Well wishes friends,

    • November 8, 2009 at 6:42 pm

      I know we have talked about cmt before, did you ever have the genetic test done for it? Have your hands started doing anything bad? Maybe inquire about the cytoxan or what Alice is doing, some insurances do pay for it, look into it for you. Or check into what Pam did.
      Dawn Kevies mom

    • Anonymous
      November 8, 2009 at 8:50 pm

      It does sound like you do have the chronic progressive form of CIDP, albeit the slow kind. I had/have the chronic progressive as well, only mine was very fast, & put me in a wheelchair in just a few weeks, hence the GBS dx originally. I doubt the IVIG is doing much, maybe slowing the deterioration just a tad. I merely suggested the immunosuppressants because I felt that they would do the same, but be a lot cheaper & easier, as they are taken orally. Interesting what Dawn suggested about the cytoxan protocol, never thought that it might work for your form; but then why not? I would check with Alice to see what kind of CIDP she was dx with, maybe the simple procedure of once a month cytoxan infusions for 6-12 months would stop your progression & even allow some of your damaged nerves to heal?

    • Anonymous
      November 9, 2009 at 8:10 am

      I am willing to try anything but more steroids.

      woke up today with excruciating…and that’s putting it lightly, pain in my neck. I cant tilt it backwards at all. All I could do was cry…still on the verge. Had to come to work to talk to some ins reps and then I’m goin home.
      IVIG today at 1030 anyway.
      This pain in my neck is like nothing before and I have a slipped disc in there.
      Cant take narcotics…but took 1000 mg of ibupfrofen and a skelaxin.
      This is absolutely AWFUL.

      better days ahead, right ?


    • Anonymous
      November 9, 2009 at 8:31 pm

      and wrestled with regarding IVIG A LOT!
      First off, the IG’s simply you get are outnumbering your own ‘mis-programmed’ ones [for whatever unknown reason[s] that have gone whacko] Therefore, they DO forestall additional damage to some/most degree[s]. There used to be an attitude in research that the NEW IG’s would help re-program the existing immune system to behave. I’ve never thought so, instinct about how immune systems switch on or off is key to this I guess…it merely stalls further damages. That’s fine with me so far.
      The other thing to think about IS the BRAND of IVIG? I have found I respond far better to some brands than others, side-effects and results, the whole kaboodle. Further, there has ‘traditionally’ been some thinking that higher doses might be required for ‘maintenance’ in the long term. That WE get ‘resistant’ to current doses of IG. Whether you get increases or not, is dependent on your own neuro’s philosophies. A hard thing to find out about…other than gut instinct? And then access to other opinions which could bolster an argument for higher doses, or doses more often.
      This all doesn’t amount to a hill of beans tho in the long run? My ins. too the deductables and co-pays have jumped up BIG-TIME! I won’t wonder WHY – too controversial for here. But, I don’t live under a rock either.
      At least, it seems your doc, and mine, are trying to help us! Keep counting your blessings! I find that often helps me get my stress levels down a tad.
      Hope always! Never lose that!

    • Anonymous
      November 10, 2009 at 8:24 am

      it is obvious that IVIG isnt working. Ryan see’s a neuro here in Grand Rapids Mi who is suppose to be very good and knowlegable in CIDP and we soon found out that he had no clue. he treats his patients one size fits all. he had Ryan on IVIG for 8 months even though it wasnt working and he was declining the entire time. I got so mad when Ryan ended back in the hospital just 2 months after getting out of the hospital and this time in a wheelchair. there were other reasons too like blaming me because I didint bring him in sooner never mind I called for months trying to get his stupid nurses to give us an appt but they kept telling me I had to wait for our scheduled appt that was 4 months away. (sorry I am getting off topic) but I found and called Dr Richard Lewis (he’s on the board of this foundation) and out of wayne state university here in MI. He saw Ryan right away and was very disgusted at how his treatment had been going since dx in Dec 2008. He told us that patients on IVIG should see themselves almost back to normal or back to normal (function wise) if its working the way its suppose to. for those who dont see that kind of improvment then its not working.

      have you tried prednisone or plasma pheresis yet? Ryan saw improvemtn with this treatment an d is now walking short distances but still uses his wheelcahir most of the time because he still has a lot of weakness. DR Lewis said he may or may not see anymore improvements with this treatment. but feels it has done a lot of good for ryan. the only problem with this treatment is that he cant stay on the prednsone for long periods of time. so we are opting for the chemo. he said there were other treatments we oculd try first but at this point Ryan doesn’t want to waste anymore time. there are lots of people at this site who have seen remission with the help of cytoxin Pam and Emily and others I have read about but those 2 names I remember the most. But Ryan is 20 will be 21 in 2 weeks and he needs to get back to his life again. college and his friends. so as soon as we see the hemotologist(Ryan has hemolytic anemia also and needs to make sure the chemo wont aggrevate that) to get the ok for the cytoxin or cyclosporine(I think thats what its called) then he will do the chemo treatments with one of those 2 drugs.

      If you need to find a new neuro then call the foundation or email dr Lewis and ask for a referral with a neuro who specializes in CIDP or CMT. First you need a correct or comfirmed dx of CIDP so you can be treated correctly. not to say your not but I see in one of the other posts that you may or may not have concerns that it could be CMT.

      as for work if its too much then either take a early retirement or quit and apply for ssi/disability. there is no shame in that. Ryan applied and got it and it was the best thing for him because he gets a check and can concentrate on his studies and getting well.

      I will be praying for you that you find a neuro who will listen and treat you as an individual and that y ou will figure out the treatment that is best suited for you and that you figure out your work situation.
      I also pray that God will strengthen you and comfort you during this time of uncertainty.

      Rhonda (Ryan’s mom)

    • Anonymous
      November 10, 2009 at 9:05 am

      I thought the IVIG would make me better. It doesnt. Supposedly, it’s keeping me “in check”. You all know as well as I do…it’s not working.

      I had my treatment again yesterday. Everything went fine. I was an hour late for work today…couldnt get up again. I try, God, I try…I just cant.

      I need to change that and push myself…b/c I could…if I really tried. It’s got to be the mind set. I’m unhappy with things around here lately…it’s better now b/c all the extra work I was doing has slowed back to just my job b/c the lady that was off for four weeks is back…until her next episode.
      All that extra stress kicked my butt hard this time.

      I wont be filing for disability any time soon. Not if I can help it. I”ve worked here for 19 years and have 11 to go to retire at the age of 50. IF CIDP takes THAT away from me…it will mean I am pretty bad off.

      I’m really sore from my neck and shoulder…cant hardly stand it.

      thanks everyone for your thoughts and prayers..I really appreciate them all.


    • Anonymous
      November 10, 2009 at 11:32 am

      Hi Stacey, Thought I’d add some thoughts. I agree with Rhonda, I think you should try to get in touch with Dr. Lewis. MI is not that far from us and would not be such a bad trip (unless winter hits hard). You know I tried Mayo and made in in Feb., but that was a wasted trip.
      Dr. Lewis seems very well known in this community and might be worth a try. We just dont have any knowledgeable Neuro’s in Ne area, it seems. I have given up, but am 70, not 29??? like you. Also, when I was taking meds from my first doc who dx me, he had me on Lyrica and Cymbalta. I think you might want to ask about the Cymbalta. It kept me on an even keel, no depression. When I fell and broke my ankles, no one could believe I didnt freak out or cry.(except from pain) might be worth a try. Try some heat for short periods on that shoulder, our daughter is having neck and shoulder problems right now and that relieves her. Feel better. Your Ne. friend, Regina

    • Anonymous
      November 11, 2009 at 12:55 pm

      Hi Stacey,

      I know its laborious but keep pushing to keep trying different things.
      Who knows, you may hit the right combo and have gains. It just seems that
      your flat somewhat on improvements. Be Strong.–tim–

    • Anonymous
      November 12, 2009 at 5:19 pm

      I’d be willing to try whatever it takes. I guess I have the hardest time with not getting back what I’ve lost and realizing that with time, I am truly losing more.

      Today I spent the day on the couch…icing my neck. It felt soooooooo good to do absolutely nothing but the guilt is awful.

      I’m having an MRI on Saturday for the neck and probably going to do steroid injections.

      Anyway…I’m still really tired and could probably lay on the couch the rest of the day and night but…cant. I’ll take what I got and go with it tho.

      So, what I’m taking from this…the ivig should have made me stay stable at the least….I shouldnt have gotten worse if it was working ?
      To keep me “in check”…would be to keep me stable. And, stable, I am not.

      WHAT works for the progressive form ? Trial and error, I’m sure. Anyone else that has the progressive type…whether fast or slow…what helps ?
      How much worse will I get ? Do I really want to know?
      Probably not. I can see for myself what’s happened in three years..what worries me now is this vibration in my leg.

      well wishes …thanks guys.


    • Anonymous
      November 13, 2009 at 8:30 pm


      Sorry I am late responding. I took a part-time job !!! Whee for me !!!

      I have thought for some time that your progress through CIDP has mimicked mine. You know, however that we are all a little different. And I know you remember much of what we have talked about in the past.

      In my Humble Opinion….. Doctors are usually going to “keep it the same” if the situation doesn’t get much worse. They seem to count “holding your own” as success. That always irked me. I would notice these changes, talk about them and then get shot down with, “well, let’s keep on the same and see how it goes.” I am saying to myself, “it isn’t going good you bleepity bleep.”

      I completely understand your frustration. You just want to feel better. A little better would help. Just not always worse. If you could go back to 2001, 2002, 2003, and 2004 you would find my posts the same as yours are now. I tried the IVIG a couple of times, it didn’t seem to help that much. I ran out of insurance and stopped. I ran out of money and had to quit immunosuppressants. I got on disability and after medicare kicked in, I went back to my Dr. who I had not seen in 1 1/2 years. He said “you seem to be holding your own, what have you been taking?” I told him “Nothing”. He said, “well that answers one question” I said “which one question?” He said “I never would have taken you off the Immuno.. but now we know that nothing bad will happen.” I said”Where do we go from here?”

      So, here is where I am… 1.) I am still screwed up. 2.) I have some days that are worse than others, and some that are better than others. 3.) The more I do, the more I suffer. 4) I will deal with this the rest of my life. 5.) It stinks.. forever. 6.) I cannot do what I once did. 7.) If I try to do what I did before, I am driven to bed and require time to recover.

      What can I do? I can’t run, jump, or walk far. I limp, hobble and sit a lot. I ask for help more often. (People do respond kindly) I live an honest, giving life and try my best to live within my abilities. (That is hard.)

      The only advice I can give is the advice you probably don’t want to hear. My neuro told me early on that I needed to find a less stressful job. I did not. I should have listened. He told me I would never recover what I have lost sensory-wise. I have not, and now understand I will not. It seems like we will have this for the rest of our lives. What can we do about it?

      Change. If you don’t change your habits, CIDP will change them for you. You tell me that you can still do some things, but sometimes it is hard. You are still blessed. Rejoice in the things you have. Understand those things that you cannot do. I totally understand your desire to finish those 11 years and retire at 50. What if it beats you down so hard that you can’t move by 50? I can’t tell you what to do, nor would I, but you need to care for yourself first. You CAN get another job, maybe less stressful. Maybe not as much money or whatever, but you CAN make it. Disability pays less than 50% of what I made before, but my wife and I are making it. Two kids in college and one just graduated. We qualified for tons of financial aid !!

      Things have a way of working out. Maybe not exactly the way you want, but happiness is in your heart anyway. You have a good love for your family, that speaks volumes. If you go back and read your own posts, your answer is clear. You just have to make the move. Trust yourself, feel confident of your abilities and understand your disabilities.

      I went through some bad depression. CIDP changes our lives. Forever. We can help ourselves, or hurt ourselves. Once I shed the “job stress” my health levelled out. No better, but not much worse. That has been 4 years now.

      PM me.


    • Anonymous
      November 13, 2009 at 9:28 pm

      Not sure what you mean by progressive form but Ryan was told by Dr Lewis that he has an aggressive form of CIDP. Ryan noticed symptoms oct 2008 was dx Dec 2008 and by April he was in a wheelchair and still is but he is actually going up the hill right now. He can walk short distances. IVIG did nothing for him and our neuro in GRand Rapids was ok with that he had no intentions on trying anything else. we were not satisfied with that and found Dr Richard Lewis. Dr Lewis than God is aggressive with treatment and is willing to try any and all treatments.

      I have said in an earlier post that you should find a less stressful job but I understand you want to retire but stress can really make your CIDP worst.

      However, if you stay at your job my suggestion would be to find a neuro who will be aggressive in treatment. he shouldnt be continuing with treatments that aren’t working. he needs to move on to the next as soon as you realize it isn’t working. DON”T SETTLE if your not happy with your current condition then keeping looking for a neuro who will be aggressive. the longer you wait the higher the chance for permanent nerve damage. But you also have to decide too what your willing to do. My son, Ryan isn’t willing to be in a wheelchair forever so he wants to do Cytoxin and asked for it this last appt. he will be getting it as long as the hemotologist clears him for it. since he has hemolytic anemia the hemotologist has to make sure that the cytoxin isn’t going to make his red blood cells break down. once we get the ok then cytoxin here he comes. some people think he is crazy because they think that treatment is extreme because of all the side effects but he wants to be better and he is willing to do whatever it takes. I’m scared for him but I know he needs to do what he feels wil make him better and if it doesn’t work then he will try something else.

      I’m in no way saying you should do something your not comfortable with I am just saying everyone with an illness should not settle for a doctor who they aren’t happy with. the doctors are not God they cant really tell you how much better or worst your going to get. just don’t settle if they aren’t telling you what you want to hear.
      I hope you find a doctor who is aggressive in treatment the goal is to get you better as close to normal as you can get. Good luck and I hope it all works out for you.

      Rhonda (Ryan’s mom)

    • Anonymous
      November 18, 2009 at 3:53 pm

      I discussed briefly with my pain mgnt dr about cytoxin. He was very against it and said it’s poison . I didnt get very far with him.

      It’s been a tough week.

      I’m still thinking about my options. I’ll see the Neuro in 2 weeks.

      My mind is on overload and I continue with extreme difficulty to get out of bed and make it to work on time. ugh !


    • Anonymous
      November 18, 2009 at 5:45 pm

      [FONT=”Book Antiqua”][COLOR=”Navy”]Dick, once again wise words … this time to Stacey.

      You are a most steady influence. Thanks![/COLOR][/FONT]

    • Anonymous
      November 18, 2009 at 6:12 pm

      Hi Stacey

      I’m sorry your having so much problems with your doctors getting some other kind of treatment. I hope you come to Michigan to see Dr Lewis. He is awesome and he listens and when you tell him that you have been on IVIG for 3 years with no improvements he will take you off it immediately. He told us that people to whom IVIG works, will make those patients improve, they will be almost lie normal if not back to normal thats why they stay on it. But for those who it doesn’t work, it will not really do anything except keep you the same or allow you to continue to go down hill.
      So since you have said it keeps you the same and now your going down hill its not working and really shouldn’t be on it. But like everyone else has said most doctors aren’t going to take you off something if your not going downhill fast. But Dr Lewis will and then he will call your neuro himself and ask of he will be willing to work with him and if he is then he will tell your neuro what treatment to order. if he will not work with him then he will help you find one that will. DRLewis told us that many doctors just aren’t knowledgeable enough about CIDP to know how IVIG is suppose to work and they really don’t know all the other treatments that are available. so they sit on IVIG for so long.
      Maybe another treatment will make you better and allow your nerves to get better and get your feeling back in them.
      Please don’t give up on gettting a new treatment. if you can’t go to mi to see DR Lewis then tell your doctor to call him. he will talk to him and consult with him. if your doctor is unwilling to consult with an expert then he isn’t a doctor youwant to see.
      don’t give up hope and hang in there. everyone here is here for you. we all want to see you get better.

    • Anonymous
      November 18, 2009 at 9:12 pm

      Dick always gives me great advice. Excellent. Always say things that I relate to , always hits home. He’s a great friend to us, for sure ! 😉

      I appreciate what you are telling me Rhonda. I just feel hopeless with this crap sometimes. I’ve put it on the back burner…living with it, doing what the Dr says and seeing no improvements or results. What happens if I go off? I’d like to know but would like to be ASSURED that if anything changes for the worse, we immediately start treatments again.
      It’s easy for me to just put everything for myself last…somehow I think I can escape the reality of it all…like it really isnt happening. It’s easy for me to do . The hard part is asking for help. Who’d have thought it could be so difficult ?
      A long time friend recently told me that I am the strongest person she’s ever known. I must put up a pretty good front.
      Or, I am strong on the outside but the inside is mush ? I dunno…whatever it is, I took it as a compliment and remembered that my Mom always told me what we’ve all heard -that God doesnt give us more than we can handle and what doesnt kill us makes us stronger. I should be dead a million times over.

      I am going to see if I can call Dr Lewis’ office tomorrow and then check flights and prices. I doubt that my insurance will pay out of state like that, too…but I wont know till I try.

      I know of another fellow CIDP’er that is about to have stem cell transplant…he is in Canada. I dont know if insurance is paying it or what but plan to follow his journey. He is on facebook and is the one that I think founded the CIDP group on facebook. Very nice guy.

      His name is Mike…I dont know if he’s on here…I dont think so.

      Time to get Connor his ice cream and me to bed…MAYBE…God help me…I’ll get to work on time tomorrow.

      Will update after I call Dr Lewis’ office.

      well wishes,

    • Anonymous
      November 19, 2009 at 7:53 am

      Hey Stacey

      Hang in there this disease is horrible. I know its hard, Ryan struggles emotionally with this stuff too.
      If the doctor rakes you off IVIG they will or should put you on another treatment. You have to have some sort of treatment. Ryan is currently get high dose of steroids and plasma pheresis and his currently being weaned off it and is going to start chemo (cytoxin) soon. Yes the cytoxin is i guess poison to your body but its used safely in cancer adn in CIDP. Ryan chose that treatment because of all the people at this site who have been put into remission from it.
      Even if you can’t come to michigan to see Dr Lewis see if your neuro will call him and consult with him.
      yes i am aslo a member of the facebook CIDP group. I beleive he is getting his treatment in canada and in canada they get free health care. I was going to facebook him to ask if it was paid for by the gov or if he had to pay.
      Hang in there Stacey

    • November 20, 2009 at 10:53 am

      He was at the symposium last year.