I don't know if many of you know this but there are only 3 criteria to diagnosing CIDP. Just thought people might like to know this.
1. Onset of at least 2 months
2. Distal and Proximal weakness
3. Showing some type of demyelination in your nerve conduction study
Only about 60-80% of people with CIDP will show a positive protein in their spinal tap. But one reason it is done is because depending on the state you live in, insurance may require it. Seems like there are just percentages for everything with CIDP.
For example
IVIG only has a success rate of about 50% and the remission rate is only about 33%. You get to feeling better a lot fast though with IVIG than prednisone treatment and the success and remission rates are about the same. I hear people being treated with both IVIG and prednisone but from what I understand you should be treated with either or. That way if one doesn't work it times to move on to the other. This all came from a video seminar I watched from a Dr. Barohn who is out of the University of Kansas I think. Anyway I thought it all to be interesting and most likely true. I had nerver heard of the Doctor but he has been studying CIDP since 1982.
There was a lot more and I took a lot of notes but it seems like we are just a bunch of percentages that people studying this disease really are not sure of. Like the 60-80% show protein in their spinal fluid to me is it 60 or is it 80? I guess there are ratios in everything like our blood tests there are ratios of normal but I"m wondering if this disease is so unstudied that this is all we can go by is percentages and hope we are in the good ones.
Don't rely too much on the idea of three criteria. When you do the research you will find that there is not a great deal of agreement on exactly what is what with Peripheral Neuropathies and just how you pin down CIDP. After all - they mostly do not even understand the mechanisms and underlying causes (the etiology). Only about 30% of patients can even identify some start point or precipitating event.
It is very hard to study because it is so rare (don't you feel lucky....). The problem is finding a cohort of people without CIDP who then develop CIDP during the study - imagine the difficulty! Probably need millions in the start group!
Mostly they start after the event and try to work back. Since some onset is really slow - how do they do that?
My current treatment is IVIg. Steroidal treatment is always a last resort (or if IVIg does not work) because the "cure" is likely to be worse than the disease - too many nasty adverse events associated with steroids.
There are about 5 different symptoms/signs they tend to look for overall, and those are three of them. In the UK they rely on the levels of proteins via a lumbar puncture as the most significant, along with the 3 above. The fifth is a nerve biopsy, but this rarely happens over here.
Also the selection of the criteria for which treatments to use are different and here it seems to be 50/50 between Steroids and IVIG. I did a web survey last year, into GBS/CIDP and the results are located on a web site:
I started out with 10 infusions of IVIG they really did little to improve my condition.Then my Neurologist put me on Prednisone,famotidine,and potassium.This combination has put me in complete remission.With a slight weight again as the only side effect.Playing golf every day and now I can even run.I have been slowly lowering my Prednisone amounts ass per instructions from my doctor.Prednisone to me has been a god send,I was using a walker totally helpless just a short few months ago.
Yes, the cure is tough. I dread treatment, because I feel like i've been run over by a bus. But I know it's the only thing keeping me from getting worse.
Don't rely too much on the idea of three criteria. When you do the research you will find that there is not a great deal of agreement on exactly what is what with Peripheral Neuropathies and just how you pin down CIDP. After all - they mostly do not even understand the mechanisms and underlying causes (the etiology). Only about 30% of patients can even identify some start point or precipitating event.
It is very hard to study because it is so rare (don't you feel lucky....). The problem is finding a cohort of people without CIDP who then develop CIDP during the study - imagine the difficulty! Probably need millions in the start group!
Mostly they start after the event and try to work back. Since some onset is really slow - how do they do that?
My current treatment is IVIg. Steroidal treatment is always a last resort (or if IVIg does not work) because the "cure" is likely to be worse than the disease - too many nasty adverse events associated with steroids.
I was diagnosed with CIDP in july of this year,started out with numb hands and feet by setember it spread to my legs and arms.Went into the hospital in October for IVIG treatments.Needed a walker just to get around.i was treally just days from be ing in a wheel chair.First time ever in a hospital and being ill it was really scary.I feel so blessed that the medication has worked for me.Harry Ted Muilenburg said:
Thanks for good information ALL John how long had you been diagnosed or taking treatments- congrats on being off walker- playing g
My neurologist told me that he looked for three things when diagnosing possible CIDP:
Symmetrical, bilateral weakness, lasting at least eight weeks.
Loss of nerve conduction, as measured by EMG.
High levels of proteins in spinal fluid.
When I had the first two, he said that he was almost certain that it was CIDP, but he did the spinal tap to be sure. When that came back positive, he was certain that it was CIDP.
Some people also look for a loss of reflexes. I have absolutely no reflexes in my legs. My family doctor tests my reflexes every time I see him, and they are always completely absent. He always shakes his head in wonder, and has called students in to look at me. (It's an odd feeling to be an item of curiousity.) But my neurologist did not even mention that issue.
From what I read, almost no one does nerve biopsy any more.
As far as treatment, steroids did absolutely nothing for me. Plasmapheresis helped a bit, but the effects wore off quickly. But IVIG was like a miracle, with great improvement in a matter of days. I am now on Imuran, and have not needed an IVIG in almost a year. But my neurologist admits that there is no way to tell for sure if the Imuran is helping, or if I just spontaneously went into remission.
Take every opportunity to educate docs and others associated. I go to the local Uni where I am a "lab rat" for the graduating Physio class - bit like "show and tell". It is fun and the students will have a better chance of spotting a peripheral neuropathy when they get into practice. I can still walk because both my Physio and Doc had some (very rare) previous experience - would probably still (almost) run if it did not take so long to get into a Neuro! And yes - no reflexes! Uncle Bill said:
My ...
Some people also look for a loss of reflexes. I have absolutely no reflexes in my legs. My family doctor tests my reflexes every time I see him, and they are always completely absent. He always shakes his head in wonder, and has called students in to look at me. (It's an odd feeling to be an item of curiousity.) But my neurologist did not even mention that issue.
The seminar the discussed these criteria was a few years old. I think it was done in 2012 and even then I thought it was not as good as it could have been because they were even using outdated charts but correcting them as they talked.
I think everyone on here seems to be right as to what ever is working for them and making them better then it is working.
The doctor doing the seminar did say nerve biopsies were very outdated. I saw someone post on this. He said hardly anyone showed inflammation in a nerve biopsy and unless it was being done in a place like John Hopkins, then most hospitals do not have the equipment to really analyze the biopsy so it's not a good test.
I am one that has unusual reflexes in that some are hyper active but my neurologist told me that is most likely being caused by my spinal cord injury in my neck.
What I wish I could find beyond just statistics is a seminar on what we go through. For example I have bladder control issues but there is nothing wrong with my bladder, kidneys or liver. It was explained to me why this was happening, but because i was told I had CIDP and then why it was being caused it went in one ear and out the other. Meaning I was told I had CIDP but not explained what it even was. This was by the doctor that gave me the nerve conduction test. And then he went on about the pain but it literally was going out the other ear. I wish I could talk with this doctor again and get him to explain again because I'd more likely now understand, but he went on a leave of absence. From what I hear, other neurologist seem to disregard the symptom parts we have and just try to diagnose. I also didn't have a high level of C reactive protein but a lower than normal level. But in reading about C reactive protein not many good neurologist put much into this test either.
At least I am getting great information and knowledge because I really need it for my next appointment with my neurologist so I can find out why it will be 6 months by the time I had seem him and diagnosed and why I haven't gotten any treatment.
Just like you I have tried IVIG but no improvement at all then saw another neurologist who pretty much did not know what is wrong with me ..I am currently helpless and getting weaker and weaker every day... may I have the name and address of your doctor? please send to my email: rockyaam6@yahoo.com.
john1953 said:
I started out with 10 infusions of IVIG they really did little to improve my condition.Then my Neurologist put me on Prednisone,famotidine,and potassium.This combination has put me in complete remission.With a slight weight again as the only side effect.Playing golf every day and now I can even run.I have been slowly lowering my Prednisone amounts ass per instructions from my doctor.Prednisone to me has been a god send,I was using a walker totally helpless just a short few months ago.
Thanks Bill! I am on a loading dose of IgG and recently Imuran. The benefits are tremendous, but I crash 11-12 dys after last infusion. I'm wondering if you, or anyone is on a scheduled infusion rate of 50grams per day every 7-8 day?
Uncle Bill said:
My neurologist told me that he looked for three things when diagnosing possible CIDP:
Symmetrical, bilateral weakness, lasting at least eight weeks.
Loss of nerve conduction, as measured by EMG.
High levels of proteins in spinal fluid.
When I had the first two, he said that he was almost certain that it was CIDP, but he did the spinal tap to be sure. When that came back positive, he was certain that it was CIDP.
Some people also look for a loss of reflexes. I have absolutely no reflexes in my legs. My family doctor tests my reflexes every time I see him, and they are always completely absent. He always shakes his head in wonder, and has called students in to look at me. (It's an odd feeling to be an item of curiousity.) But my neurologist did not even mention that issue.
From what I read, almost no one does nerve biopsy any more.
As far as treatment, steroids did absolutely nothing for me. Plasmapheresis helped a bit, but the effects wore off quickly. But IVIG was like a miracle, with great improvement in a matter of days. I am now on Imuran, and have not needed an IVIG in almost a year. But my neurologist admits that there is no way to tell for sure if the Imuran is helping, or if I just spontaneously went into remission.
Thanks Shawn. I'm on 100 gr every 14 days. Anyone here on 50 gr (or more) every 7 days? I'm wondering if that dose will slowly explode my liver or.and kidneys.
I was 4 years into ill health before I changed my GP and within 10 days had a diagnosis in 2001. I have had all the tests including the radial biopsy, several times, every time I changed my neuro doctor,actually. Now I get on with what is left of me and make the most of every day.
I do I.V.I.G every 4th week…and don’t feel a lot different…but what would I be like without it? Who knows?
Not my docs that’s for sure!
My advice is stop searching,because right now there is nothing in the way of a CURE. Only a means of slowing the process down. Make the most of what you have in the way of mobility: take on board all means of aids and help to make life as good as possible, and mingle…do NOT hide away waiting for a cure.
By the way I am an optimist…no doom and gloom for me…just not prepared to be robbed of my life by this disease.