CIDP also

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 …

Julie

Withhope

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

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!)

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

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

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,
Lori

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.

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.
Dawn

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.
Dawn

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,
Kelly

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

Gabrielle,
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!
Dawn

Thanks Dawn,

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

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.
Dawn

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

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

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!