CIDP also

    • Anonymous
      April 2, 2008 at 3:00 am

      Hello, all. It has been awhile since I posted. My neurologic status continues to baffle my neurologist and drive me bananas. He now says that the most likely diagnosis is CIDP and then proceeds to tell me the many ways in which I am atypical of this diagnosis. I did get a loading dose of IV IgG at the end of January and this helped, but then three weeks ago, got a smaller dose that did much, much less and for only a few days. I saw the neurologist again yesterday. It was a kind of discouraging visit. we talked about repeating the loading dose of IV IgG, but he is reluctant to try any other treatment because of the atypical nature of this process–normal protein on spinal tap, no loss of the very brisk reflexes I have always had, cranial nerve findings, and fatigue (that he does not really believe is caused by CIDP). Also that the left leg is worse than the right in footdrop.

      I did go for a second opinion across town in early February. that was interesting (and discouraging). This neurologist said that he did not think it was GBS/CIDP and also, amazingly enough, said that I walk normally and have normal strength except for rising from sitting on the floor. My walking is not normal at all–I have strangers comment on it frequently and use AFOs, a cane or walker, and a scooter. I think the problem is that 4-5 steps in an exam room is not enough to look at how someone walks. I am weak, but not so much that I cannot resist a second of soft testing on neurologic exam with any muscle groups. My neurologist is thinking of having me get another opinion at Cleveland Clinic. I am nervous about this, because it is hard to get up hope for some insight into what is going on and have people just puzzle over it instead.

      I would appreciate any words of encouragement or advice. Just to make life more fun, work is difficult due to all this and I will very shortly turn 50 years old. I already feel so very, very old because of hobbling around and restrictions in walking and what I can do and the fact that I use a scooter. I am usually pretty philosophical about life, but this CIDP process is teaching me new meanings of challenged.

      Thanks, WithHope

    • Anonymous
      April 2, 2008 at 3:42 am

      I can SO sympathize with the “atypical” CIDP causing problems in diagnosis. I’ll repeat what my Hopkins neuro said to me when I finally got a diagnosis after 24 months at 14 other doctors…

      You have CIDP, it’s not a typical presentation but when you have seen enough CIDP and GBS cases you realize that there are quite a few atypical cases.

      I do encourage you to get a second, or third, opinion. My doctor is an MD/PhD who specializes in demyelinating diseases, he sees a lot of people with a variety of demyelinating diseases and that gives him some perspective. When I came in with this random bag of tricks and asking for a diagnosis it only took him about five minutes to say “you have CIDP, it’s not a typical presentation….etc.”

      My neuro tells me the fatigue is typical of both GBS and CIDP and some people NEVER GET OVER IT even when everything else returns. I also have cranial nerve involvement (see my post a few weeks ago about that spectrum we can fall into) and my right leg is and always has been worse than my left for foot drop. My first two neurologists said I didn’t have CIDP because of this variety of atypical symptoms but that’s because the first had only seen a few other CIDP cases, the second was … well… he was strange, he kept talking about Cuban cigars and rum, neither of which I have any interest in.

      I’ve heard good things about the Cleveland Clinic… don’t just ask for the first available neurologist, ask for someone who specializes in either demyelinating diseases, or if they don’t have that then neuromuscular diseases. Someone who primarily treats strokes won’t have the perspective you are looking for to get a firm diagnosis of CIDP.

      Good luck, take a patience pill …


    • Anonymous
      April 2, 2008 at 4:32 am


      I turn 50 this month. I can relate. I use a scooter, I hobble badly, I get frustrated with a “gait diagnosis” in four steps. I have asked for him to watch me walk up and down the hall. It makes a difference. It is also a different matter when you put stamina into the equation. One squeeze does not mean that I cannot rub my wife’s back for more than 5 miknutes and my hands hurt like %#$$ then.

      My symptoms were challenging for my neuro to diagnose. They knew something was there, but it was hard to figure out what it was. My CSF protein count was 56, upper normal is 45. Many GBSD?CIDP patients score from 150 to 300 sometimes. Mine was just a little red flag. The EMG/NCV was abnormal, but did not point to a specific cause, just demyelination. The numbness was slight, and there was little weakness. I had no tendon reflexes, I was a challenging diagnosis. A sural nerve biopsy did the trick and really left no other diagnosis but CIDP. Process of elimination.

      I guess what I am saying is that you are not alone. This is a challenge for us all. It is frustrating that we only have a discussion forum to hash out our problems. It is so difficult to get to meet anyone else who actually has CIDP, due to the rarity of the disease.

      Fatigue can be a part of this, there is a muscular component. Fortunately, the IVIG and other treatments seem to have the most dramatic effect on the muscles before the sensory.

      Hang in there. We will be thinking of you.

      Dick S

    • Anonymous
      April 2, 2008 at 9:28 am

      You need to get other opinions on this.

      Most people don’t have typical CIDP symptoms because no one really knows what ALL of the symptoms are. It’s such an under-researched disease that no one really knows all of the variants.

      Look at all of the people here. There are so many different variants & symptoms just among our little group. But we all have a few things in common weakness, numbness & fatigue.

      I have to respectfully disagree with your dr on fatigue not being part of CIDP. That’s a load of crap. I know from personal experience that it is.

      If you got better after IVIG then it works for you. You need to mess around with maintenance doses & schedules. You might not be able to go 3 weeks & get the typical 1g per kg or whatever you got. You might need treatment every week or 2 with a higher dosage.

      You work with kids with autoimmune diseases. You see the variations in all of those diseases. I know you do. No one perfectly fits into each disease perfectly, I think there’s always something that is slightly different in each person. You honestly cannot believe what this dr is telling you. You know in your heart what the right answer is. You work with people going through the same type of things and you come here & talk with all of us.

      Get more opinions. If it takes seeing 100 dr’s then that’s what it takes.

      Good luck,
      Kelly (is really hating stupid dr’s today!)

    • April 2, 2008 at 11:02 am

      Hi With Hope,
      I felt an odd sense of relief when I read your post. You now have an answer. Now, it is just a matter of accepting the dx. Not everyone has an elevated protein with the l/p. NCV/EMG as well as your clinical presentation are diagnostic predictors as well. The doc cannot deny the foot drop, weakness, most importantly, the fact that you DID improve with the ivig. The puzzle is large, and not all of the pieces fit, but you have to look at the whole and figure out the overwhelming amount of pieces point to cidp. I assume you were tested for all of the other obvious possibilities, cmt, ms, als, not to mention ivig would not be beneficial to any of those.

      Now you just have to figure out the ivig course of treatment. You know Kevin’s schedule, and it is working wonderfully. I was so opposed to the monthly loading doses, but glad I listened to our doc. If we could just get the reactions to ivig under control, Kevin said he could deal with the cidp.

      Is there any reason in particular that the doc is hesitant about the dx or ivig? Did he acknowledge the improvements You felt after the initial loading dose?

      I used to think this was a death sentence, but it is not. It just is a major hassle until you find out the treatment that works for you. On a positive note, I think I am observing certain constants on the site regarding ivig and who it works for. It appears that those who see an immediate reaction to the first loaading dose seem to struggle less, and maybe even be in the relapsing remitting varient. Those that do not respond, seem to maintain their position, but not get dramatically better, those people I think, might be the progressive variant. Based on your comment you felt better after the first loading dose, it seems like you may in fact have the relapsing remmitting type. That is a positive note. At least cidp does have a medicine and everyone with it can feel better. Right now we are in a holding pattern until they find a cure, but we can hold. MS, ALS, LUPUS, so many other diseases are so much worse. Although cidp SUCKS, it could be worse. I really do think it is making Kevin stronger and affording him the opportunity to become something greater in his life had he not been humbled by this illness. It has done the same for me. I can only hope that soon my husband and older son will learn from this experience and treasure what they have! I am praying that you get the answers you are looking for and the treatment that will work best for you. Read Damon’s story, think about Kevin, Emily, they are all doing great and eventually, you will get to that place too!

      Dawn Kevies mom

    • Anonymous
      April 2, 2008 at 11:27 am

      please go to the clinic and get a neuro that has knowledge about cidp and/or neuro muscular syndromes’

    • Anonymous
      April 2, 2008 at 1:15 pm

      With Hope,

      I’m sorry for your situation. It took Dell over a year to get dx. and so much damage was done in that time, who knows if he will ever walk “normally.”

      I’m also on the bandwagon for a 2nd, 3rd, 4th opinion. I also go back and forth about Dell’s dx. We know ivig worked for awhile and know now that solumedrol works.

      He’s being weaned off of solumedrol so we’ll see how that goes.

      Good luck,

    • Anonymous
      April 2, 2008 at 8:06 pm

      IF ALL CIDP folks had ‘classic’ presentations we wouldn’t necessarily be here, right?
      I actually had one [large area] hospital neuro department head tell me I could NOT have CIDP because I was NOT in a wheelchair. I replied to him that: I was treated just in time to KEEP from being in a wheelchair. Excuse me? Of course, this was another neuro at another hospital ‘across town’ and the doctor ‘egos’ to prove each other wrong was definitely in play.
      While it seems an impossible task and somewhat unnecessary option? Go to a bigger hospital with a known history of abilities to diagnose CIDP and then plunk it on your home town neuro’s desk. That way, he’s kind of off the hook about the IVIG, which it sounds like you need. Truly one thing in the whole diagnostic and treatment regimens indicates that IF there is an IVIG positive response…it’s a duck? Plus a lot of tests to back it up, of course.
      For me, it only took three trips to the ‘big city’ for my diagnosis. Nearly all of the testing was done near home. That kind of thing can be worked out easily.
      As others have said, second, third and multiple opinions are cheap compared to your life. They are WORTH it! I am still kicking myself that I did not change neuros right away, the first one was a total dud and was not on the ball at all. The damages done and likely permanent are inestimable. The last four out of five years have been ‘catch up’.
      Some neuros are very reluctant to use IVIG. I think it goes back to their training somehow…That ‘opinion’ by an ‘expert’ higher up the reputation food chain should help get and keep the IVIG pipeline going. Do not delay in trying to get an appointment ASAP someplace super! They can take months to get and you don’t want to experience any more set-backs than you have.
      As for feeling ‘OLD’? Yes! This stuff does age you! I ‘used’ to look 10+ years younger than I was until CIDP. Now I think I probably look 10 years older. Bad enough the ‘walk’ and all, but to be treated as one FAR more senior than I am is truly an ego blaster.
      So, tomorrow go and call for a real opinion and go and get the right and best treatment you can! And, keep everyone up to date on it! It sometimes takes a lot of work to get that diagnosis and treament, but it IS worth it.

    • Anonymous
      April 2, 2008 at 8:11 pm

      I thank all of you for your kind thoughts and wishes. I do feel in my heart that this is CIDP. I actually have felt this was the case for a long time. Dawn says a hard part of this–accepting it and Dick the even harder part of learning to live with it. I feel like I have been ran over by a train, not because of the diagnosis, but because of the process and the impact it is having on my life and career. I thought when I responded to the IV IgG that I might survive academically at this university and then, wham, the next time did so little. And all this nebulousness about the diagnosis and atypical manifestations. It is quite discouraging. To top it off, it is hard to be a health care provider and to be a patient. Kelly is right in that knowing how seldom people with rare diseases act like they are supposed to act in the medical textbook makes it sometimes more frustrating when others argue about what is going on with me being not typical. It is true that this is sudden onset peripheral neuropathy in which there is nerve conduction slowing, bilateral foot drop, a strange gait, lots of fatigue and functional weakness, the process has ups and downs, but it has responded twice to IV IgG, just not the lower doses of this. In the ways that matter most, it fits with CIDP. This does not change, however, the fact that I do not want to have this. I keep hoping that I will wake up one morning and find that this last year was just one bad nightmare and that all these challenges are gone. I thank you all for your kindness and strenght to share your stories with each other to help each of us find a path of living through this briarpatch. It makes it easier to not be alone and to know people relate to what I am going through. thanks Julie, your kindness and humor inspire me and I am tempted to just see if I cannot go see your neurologist at Hopkins!

      Has anyone been to the Cleveland Clinic and had a good experience with a doctor there that understands and has plenty of experience with this odd disease?

      WithHope (although it is just a tiny glimmer right now).

    • April 2, 2008 at 8:56 pm

      With Hope,
      No talk of this tiny glimmer of HOPE!!!! Do not loose sight of the fact that ivig DOES work for you! YOu can maintain at your place of work academically, if not eventually back to a near full schedule. In 18 months of this crud Kevin has done the bell curve twice before we figured out this atypical presentation. He has been unable to walk and in icu for 10 days on monitors to present, RIGHT NOW, jumping on the trampoline in the dark, elated with the new stregnth that comes his way with every treatment.

      You have to know deep down with your abundance of knowledge that a loading dose will give you the best opportunity to start healing. Not enough ivig will never allow the demylienation to stop, you will not get the opportunity to repair. Each time since November, so that makes 5 treatments, Kevin is making new progress, almost at ground zero. Maybe you are going to need to do the loading doses every 3 weeks, what ever it takes to get you symptom free. Your career is waiting for you, you just have to take it back! We need your positive, informative insight back here too!

      Regarding the nightmare, once you get over that phase, you start waking up in the morning thinking today it will be gone. (Well I do anyway, that is where I am now) I have to start to learn not to do that because it is a disappointment when I get back to reality. But one day, there may be HOPE!!! I live for that day to come for all of you! To be honest, I don’t know how Kevin goes on day to day. It must be so scary wondering if you can keep up with your friends today, will he be able to stay this strong, get a job, get married, all of those things. I don’t know how you guys do it, but you do!! Everyone here is so strong, it amazes me!!! Best of luck in the coming days while you take everything in.

    • April 2, 2008 at 9:10 pm

      With Hope,
      I also remember reading about a Dr. Saperstein in Arizona, he runs a whole cidp/gbs clinic there and is on the board for this foundation. In case I am mixing up the dcos name in connection with the state, call the foundation. I am sure it is in Arizona. Additionally, there is a Dr. Latov in New York. I know this awesome lady that is the regional director for Ohio, and she is the kindest, most helpful and compassionate woman you could ever meet, give her a call. Her name is Kassandra Ulrich. I really encourage you to call her, although she has gbs, she has much insight on Drs. and could probably direct you. Did you ever make contact with Dr. (spelling) Dalakas who is new to the board and formerly with the ninds? Perhaps he can direct you.

    • Anonymous
      April 3, 2008 at 10:07 am

      Dear WithHope –

      If you’ve responded to IVIG TWICE then you need to get more. You need the full 4-5 day loading dose of 2g per kg then you need to figure out your maintenance dose & schedule.

      Since your dr is not willing to commit to your diagnosis or your treatment then you need to find a new one ASAP. You need to get on the ball with this because it can take 2-3 months just to get in to see the dr. Then he/she will want to run tests & all of that jazz.

      Locate a neuro who is familiar with CIDP & make that appointment TODAY (or ASAP).

      No one ever wants CIDP. But it’s better to have CIDP than some of the other diseases I’ve learned about. There’s a treatment for it. And people do recover & go into remission. Even if you can’t get to remission MANY, MANY, MANY people go on to live almost normal lives. CIDP is NOT a death sentence by any means. It changes your life. It changes you. But once you realize that you have CIDP & CIDP does NOT have you, then you can live again.

      Seriously. Find a new dr. You know in your heart what needs to be done.

      Good luck and hugs,

    • Anonymous
      April 3, 2008 at 7:10 pm

      Hi With Hope,

      I will tell you I’m sorry i didn’t respond sooner but it has been a week here. BUT I am so much like you in my CIDP. My left leg is worse than my right and my right arm is worse than my left. I still have reflexes, although slowed in the left. I had elevated protein though. BUT and one of these posts said it to you, I waited 6 months to see another neuro. Poof, he gives me IVIG, of which the other MD just said to wait and it will go way, and I can walk better. But by that time, I believe I have permanent damage that may never go away. My understanding was if IVIG worked, and even if you had some type of variant like others do here, then the actual diagnosis wording should not hinder your ability to get IVIG. And I agree you are getting too little. I started on once a month, and am now on every two weeks. My last batch didn’t work, but today’s did and I feel great right now. I have another dose tomorrow. I am also a nurse, and this week was told I was not fit for work. THAT is a big slap for me, and I have been home all week trying to sort through FMLA etc. But you know what? I feel better not working this week, so maybe this is what I needed all along? I prepared my neuro that he may have to STD and LTD papers just in case. Things do work out, and it sounds like you are in a slump. Find a doc that you like and trust and can talk to or see if the one you are seeing will try the full loading dose and maint. that is sufficient for you. Good luck…..Gabrielle

    • April 3, 2008 at 8:12 pm

      I am so glad you are feeling good! How wonderful you are seeing results from the ivig now. You have come a long way in a short time! Keep the good news coming!

    • Anonymous
      April 3, 2008 at 10:04 pm

      Thanks Dawn,

      Maybe the last dose really was a bad batch, who knows? Have a good night!

    • Anonymous
      April 4, 2008 at 1:37 am

      Hi, thank you everyone for your comments and suggestions. It helps so much to have people support and understand. It also helps to have people commiserate about how this condition alters ones apparent age. A year and half ago, I felt and acted(!) like someone in her late twenties –half my age. Now I tell people I feel (and act) like someone who is 92 (roughly twice my age or at least what I admit to…). Gabrielle, I am so glad that you are doing better, but I can feel how tough the news about work was this week. I hope a lot that you get stronger and better so that you are able to do what your heart’s desires ask of you.

      I wanted to say that I like and trust my neurologist. I think that he is thoughtful and patient to try to answer all my many questions. I went for repeat NCV testing yesterday and talked with him more. He said that the NCV was pretty stablly mildly diffusely abnormal. He has said that you can see mild abnormalities with CIDP, but that the stability is not usual. (Yes, I know some of you will say I have gotten 4 cycles of IV IgG in the 13 months and this may have altered the course). Anyway it is a little clearer–apparently he is still worried that there is a problem in my spine or brain (such as MS or another autoimmune process). He is having difficulty deciding if this is a central or peripheral nervous problem because it is not typical of either, but has features of both. treatment depends somewhat on what it is and referral to a big place is helped by knowing what it is as big places divide out neurologist into groups based on similar disease processes. Anyway, he is going to think about the NCV tests and all the rest and take action on a plan to better define and treat this. Thanks to all of you for your support to push to make sure that this happens and that there is not a watch and wait approach continuing because that was not working.
      With Hope for cure of these diseases.

    • Anonymous
      April 4, 2008 at 1:39 am

      I meant to suggest to Gabrielle. I think Dawn has suggested before keeping track of the type of IV IgG each time so that you make sure you get the same kind. Someone has also suggested writing done the lot numbers. This might minimize the chance for a “bad batch”.

    • April 4, 2008 at 9:29 am

      Regarding keeping trac of the ivig, there are a set of stickers on the bottles that the nurse or hosp. whichever your setting, puts on the charts (in theory). There also are a set of stickers on the outside of the box. I peel these off and stick them on a sheet monthly and keep them in our binder in the infusion section. You also can get the number off the bag if the pharmacy pools it into one bag.

    • Anonymous
      April 4, 2008 at 6:21 pm

      Hello, I read with understanding, a little humor, and sadness this post of yours.
      “a strange gait, lots of fatigue and functional weakness, This does not change, however, the fact that I do not want to have this. I keep hoping that I will wake up one morning and find that this last year was just one bad nightmare and that all these challenges are gone.”
      I was dx in Nov 2007 with CIDP, Anti Mag IgM and have had the feeling for six months that i would wake up and it would be a bad dream. Each day has been a challange in the walking, gait, pain, etc., however, one of the biggest challanges has been how to deal with this mentally and come to terms of acceptance, which I’m still working on.
      The IVIG after five months wa discontinued and I just finished my fifth plasmsphresis treatment yesterday. it, also, has done very little. I see the MD on Mon.
      For the first time yesterday I referred to myself as disabled, HELLO, me with the walker with the seat, that has to sit down every few seconds before contuning to walk.
      As for aging, I’m now 150 years old. Body, shakes, rattles, and rolls. Remind myself of Tim on the Old Carol Burnett Show.
      My husband is terrific and handling caregiver plus all household issues with humor and concern. Makes me feel guilty.
      So each day, i attempt to wake up with a posetive attitude and thank God for the day. Notice I said attempt.
      Hang in there and know we are here for you, old or not

    • Anonymous
      April 4, 2008 at 8:59 pm

      You mean take it off of the IV bag? I get it at home now. I’m going to go dig the bag out of the can and see if it’s there. It was really weird the last time 2 weeks ago because I also got a terrible phlebitis. Today, nothing but good. I’m glad you visit went well too. I just read that. At least he is putting some thought into things, which is all you can ask. Keep me posted….Gabrielle

    • Anonymous
      April 4, 2008 at 9:01 pm

      well there is nothing on the bag. But it is the same brand I usually get. I’ll have to check on that next week. Thanks for suggesting!