Help!.....I'm confused!

General General CIDP Discussion
1

As you know from previous posts I'm struggling with insurance over treatment options. I have taken the advice I've recieved here and am filing an appeal since my doctor has exhausted all of his.

My Neuro told me I have CIDP and explained it at length. Said the biopsy of sural nerve showed a severly diseased and demylated nerve and I needed to start IVIG treatment ASAP - hopefully the next week. This was last month.

In reviewing my denial from the insurance company it says:

Diagnosis: 357.9 Unspecified inflammatory and toxic neuropathy (?)

That's not CIDP is it??? I know very little about insurance codes. I have googled it all morning and I don't find anything but reference to insurance codes.

Someone educate me please.

2

Toxic can mean poisonous OR it can mean caused by drugs or chemicals by ingestion or environment. Basically, this diagnosis IS CIDP, but by it being coded the way that it has been, your doctor is saying that your CIDP has been caused by for example, by a flu shot. Don't sweat the small stuff!!

PS: when looking up diagnosis codes, the correct term is "ICD-9".

3

The code on my hospital admission for IVIG is CIDP- 357.81. My insurance is a self funded plan administered by Blue Cross and I have never had a problem with getting the treatments approved.

4

I'd call the doctor ordering the IVIG and ask them why they coded it the way they did instead of the standard CIDP code. It could be something as simple as his EMR (electronic medical record) system coded it that way. He might make an "addendum" to your chart and code it the 357.81. My neuro didn't use a code on my order, he just wrote "CIDP" and the nurses at the infusion center said to me, "you got WHAT?!!". LOL.. Your doctor might just have to bite the bullet and get the spinal tap. Good luck!

5

Hi Maggie,

That number is from a list (basically) called the ICD-9. ICD stands for International Classification of Disease. Here's the wiki on it: http://en.wikipedia.org/wiki/ICD-9_V_codes

The ICD is a long outline that organizes diseases into systems or specialties, such as neurological disease or diseases of the reproductive system. Each disease that is recognized within the outline gets a code number. This code is used for billing insurance companies. It may also be used as shorthand in other places in your medical records.

The U.S. will transition to the ICD-10 in 2015. In the ICD-9, CIDP has a specific code, 357.81. In the ICD-10, it looks like CIDP will not have a specific code and will be listed under code G61.8 "Other Inflammatory Polyneuropathies."

http://en.wikipedia.org/wiki/ICD-10

As to your paperwork, I think one of two things has happened, but you will have to sort out which it is. Your doctor may have used the wrong code. (357.9 is the wrong code.) If that is the case, have him re-submit with the correct code. (He could be using what's called a crosswalk that refers the user to to the ICD-10 wording and that could have caused this error.)

Alternatively, your insurance company may have rejected the CIDP code of 357.81 and applied code 357.9 to your paperwork. Why? Your insurance company may agree with your doctor that you have some kind of inflammatory neuropathy, but they do not "agree" that it is CIDP. (This would go back to the lumbar puncture, probably, that we discussed in another post.)

This actually gives you a great reason to call the insurance company: honest confusion. Make sure they denied you for CIDP treatment. Calling also lets them know you will keep trying for approval.

6

We are lucky to have your expertise Joy. Thank you!

Joy said:

Hi Maggie,

That number is from a list (basically) called the ICD-9. ICD stands for International Classification of Disease. Here's the wiki on it: http://en.wikipedia.org/wiki/ICD-9_V_codes

The ICD is a long outline that organizes diseases into systems or specialties, such as neurological disease or diseases of the reproductive system. Each disease that is recognized within the outline gets a code number. This code is used for billing insurance companies. It may also be used as shorthand in other places in your medical records.

The U.S. will transition to the ICD-10 in 2015. In the ICD-9, CIDP has a specific code, 357.81. In the ICD-10, it looks like CIDP will not have a specific code and will be listed under code G61.8 "Other Inflammatory Polyneuropathies."

http://en.wikipedia.org/wiki/ICD-10

As to your paperwork, I think one of two things has happened, but you will have to sort out which it is. Your doctor may have used the wrong code. (357.9 is the wrong code.) If that is the case, have him re-submit with the correct code. (He could be using what's called a crosswalk that refers the user to to the ICD-10 wording and that could have caused this error.)

Alternatively, your insurance company may have rejected the CIDP code of 357.81 and applied code 357.9 to your paperwork. Why? Your insurance company may agree with your doctor that you have some kind of inflammatory neuropathy, but they do not "agree" that it is CIDP. (This would go back to the lumbar puncture, probably, that we discussed in another post.)

This actually gives you a great reason to call the insurance company: honest confusion. Make sure they denied you for CIDP treatment. Calling also lets them know you will keep trying for approval.

7

hi my name is Terry and I was diagnosed with CIDP in February 2012. And I’ve been given the prednisone which did not work gabapentin which did not work and now I am on IVIG twice a month. I use a fentanyl patch, and I vicodin for breakthrough pain when I can’t stand her anymore. So the IVIG helps it’s not a cure-all. EFX of the IVIG are as follows joint stiffness, nausea,but most importantly the tag I am very weak for couple of days and I’m usually in bed sleeping for almost a week for me to try to do anything feels like I’m caring ton on my chest. My symptoms for CIDP are numbing toes to the balls of my feet burning feet burning calves tremors in my hands loss of balance. I also have fibromyalgia which does not help. As far as insurance goes, I am very thankful my insurance covers my IVIG and I am on compassionate care through the Pharmacy that supplies me with the immunoglobin.please someone share your feelings with me am I wrong when I say that if I overdo it I’m in bed for 2 days I have no strength I do a little exercise because if I over do it I’ve been dead for 2 days so I’m damned if I do and I’m damned if I don’t help please help thank you

8



Theresa Frances Travers said:

hi my name is Terry and I was diagnosed with CIDP in February 2012. And I've been given the prednisone which did not work gabapentin which did not work and now I am on IVIG twice a month. I use a fentanyl patch, and I vicodin for breakthrough pain when I can't stand her anymore. So the IVIG helps it's not a cure-all. EFX of the IVIG are as follows joint stiffness, nausea,but most importantly the tag I am very weak for couple of days and I'm usually in bed sleeping for almost a week for me to try to do anything feels like I'm caring ton on my chest. My symptoms for CIDP are numbing toes to the balls of my feet burning feet burning calves tremors in my hands loss of balance. I also have fibromyalgia which does not help. As far as insurance goes, I am very thankful my insurance covers my IVIG and I am on compassionate care through the Pharmacy that supplies me with the immunoglobin.please someone share your feelings with me am I wrong when I say that if I overdo it I'm in bed for 2 days I have no strength I do a little exercise because if I over do it I've been dead for 2 days so I'm damned if I do and I'm damned if I don't help please help thank you
9

Are your symptoms worse as you get closer to your next dose? You may need a higher dose. I presently have insurance that pays for IVIg every week and that has made a big diffierence, however that may not be an option for you so maybe you could increase in the amount. Many people don't get the necessary dose due to cost.

Have your tried any immuno-suppressants that are effective for fibromyalgia? As you know, when you have two auto-immune issues it's difficult to determine what is causing the discomfort so I'd focus on overlapping treatments. I happen to have Lupus and CIDP.



Theresa Frances Travers said:

hi my name is Terry and I was diagnosed with CIDP in February 2012. And I've been given the prednisone which did not work gabapentin which did not work and now I am on IVIG twice a month. I use a fentanyl patch, and I vicodin for breakthrough pain when I can't stand her anymore. So the IVIG helps it's not a cure-all. EFX of the IVIG are as follows joint stiffness, nausea,but most importantly the tag I am very weak for couple of days and I'm usually in bed sleeping for almost a week for me to try to do anything feels like I'm caring ton on my chest. My symptoms for CIDP are numbing toes to the balls of my feet burning feet burning calves tremors in my hands loss of balance. I also have fibromyalgia which does not help. As far as insurance goes, I am very thankful my insurance covers my IVIG and I am on compassionate care through the Pharmacy that supplies me with the immunoglobin.please someone share your feelings with me am I wrong when I say that if I overdo it I'm in bed for 2 days I have no strength I do a little exercise because if I over do it I've been dead for 2 days so I'm damned if I do and I'm damned if I don't help please help thank you
10

I GET 240 grams of IgG , twice a month, in six separate and very long infusions (6-7 hours each). TO say my life is ruled by IgG and the infusions is an understatement. I've been pounding the CIDP diagnoses for about twenty months. I have very few side effects because I read... read... read, and I demand that my stabbers and infusers and neurologist do what I ask of them. I try to take control.

I have many of the relapsing problems with weakness, etc,. that others have on this site. I've learned to separate my diabetes from my CIDP. I've learned that CIDP is only one thing: a failure of muscle that move the body's muscle-skeptical (lol) system, bugger-up the anatomical nerve system muscles, disrupt sensory response to muscle systems/tracts and goober-up the mysterious entrnic nerve system's muscles... in other words, muscles defeated. In the mush-mash of CIDP and myelin's defeat, the sensory systems scream out, but mainly we are dealing with lower motor neurons in distress and defeat in the spine.

For 12, maybe 15 years I explained to the Kaiser that two or more diseases were slowly ravaging my body. Nada and nothing and 10 neurologist no-nos in those years... the pay is lousy for neuro boys and gals in Maui, cost of living is presided over by hospitality industry vampires.

I did suffer one side-effect from the Kaiser though... I was arrested and thrown in jail for muttering, before my Jan. 31, 2013 infusion, "my bag is so heavy, it feels like it's full of bombs". A neophyte office worker heard, "... full of bombs...".

Jailed on a felony, dutifully appearing at three court appearances, paying big money for lawyerboy, six months probation... and of last week, all these side effects became a thing of the past.... I hope. The Kaiser can still press me for the cost of the hospital evacuation and the Maui police can bill me for their involvement in that day of mock infamy. Hundreds of thousands of dollars....

To say that CIDP is a treatable disease may be a happy statistic for many, but once big money enters the equation, the equivocation on the part of insurers increases exponentially.

11

Thanks everyone, really helpful information. I appreciate you all very much :-)