What is your code? or how to get what you need

    • Anonymous
      September 6, 2007 at 7:09 pm

      Denial or approval of a specific treatment by insurance companies depends, of course, on the diagnosis. As far as the insurance companies are concerned, it is the correct code assigned by the doctor. This is called the ICD code, also known as ICDM or ICD-9-M code. For CIDP to get IVIG it must be 357.81. Google ICD code 357.81, also try ICDM code 357.81. GBS would be 357.0

      One easy way to find out, short of asking your doctor, would be to look how orders for blood work are coded. I wasn’t aware of all this until now so I don’t know what code my neurologist in Denver used. She did get the IVIG for approved for the last 2 years. Strangely enough, the oncologist I saw last year in Denver used a 356.9 code in his clinical notes. I looked it up and found [B]Hereditary and idiopathic peripheral neuropathy; Unspecified[/B]. His unwillingness to order Rituxan may have to do with how he classified my variant of CIDP, antiMAG IgM neuropathy. Rituxan is the one treatment which is most promising for me.

      Yesterday I saw a new oncologist here in Ft. Collins, Dr. Romero. He is from Italy with a distinct accent. I told him right away that I wanted him to diagnose me with Waldenström’s, a variant of nonHodgkins lymphoma disease. This would guarantee me the Rituxan I want which is only approved for nonHodgin’s and RA. I wouldn’t wish this disease on anybody and he didn’t see any sign of it. After long discussion of what he did and did not find in my older blood work, he finally agreed to try getting approval for Rituxan. He ordered new blood work including immune-system related tests like immuno-fixation. Before having blood drawn this morning Carol copied the codes. We looked it up at home right away. Lo and behold, it was

      [B]273.1 Monoclonal paraproteinemia [/B]
      [INDENT][INDENT]Benign monoclonal hypergammaglobulinemia [BMH]
      Monoclonal gammopathy: associated with lymphoplasmacytic dyscrasias
      benign (familial)
      secondary to malignant or inflammatory disease[/INDENT][/INDENT]

      Finally, paraproteinemia. Sound familiar, [B]Allaug[/B] and [B]Ken[/B]? PDN!

      So, to make a long story short, I might actually be on my way to get what I really need. IVIG or Prednison just isn’t the answer for me.

      PS. Interesting related website talking about approval for IVIG:

      [B]Definition of ICD coding system[/B]:
      The International Statistical Classification of Diseases and Related Health Problems (commonly known as the ICD) provides alpha-numeric codes to classify diseases and a wide variety of signs, symptoms, abnormal findings, complaints, social circumstances and external causes of injury or disease. Nearly every health condition can be assigned to a unique category and given a code, up to six characters long. Such categories usually include a set of similar diseases.

    • Anonymous
      September 6, 2007 at 8:36 pm


      I worked in billing for 7 nephrologists for 3 years and had to deal with the ICD9 codes. (I was the medicaid biller) I can certainly understand the frustration you have felt at not being able to get approval for the Rituxan.

      You are correct in that if it is not billed correctly, or in trying to get approval you must have the correct code to go with the treatment plan. Having denials with wrong codes happens. (Unfortunately it is the patient that pays the price, the docs can always rebill using the correct code and get paid) The docs I worked for were very good and took time to get things correct for the patients. Also our billing department would also keep the docs informed on a regular basis as to the changes in the codes. The last thing they wanted was to use the wrong ones and not be paid or have the treatment they needed for the patient denied. One little number can make a simple thing into a mountain of a problem.

      I am so happy to hear that this new doc is willing to go the extra step in using the correct code, not only for billing but to get proper approval. It is sad when they don’t take the time, as patients pay the price as you well know.

      Hope to hear that you got the approval and are beginning the treatment asap.


    • Anonymous
      September 6, 2007 at 9:24 pm

      Good Luck Norb! I hope this is the magic bullet for you – it has been a long time coming.

      Best Wishes

    • Anonymous
      September 6, 2007 at 9:31 pm

      Norb, Good for You, going to another onc dr, and making him work for you. My fingers are crossed for you, and I’m praying you will get Rituxan soon!!

    • Anonymous
      September 7, 2007 at 7:11 am

      Norb I hope you get approved. Good luck you deserve it.


    • Anonymous
      September 7, 2007 at 1:01 pm

      I’m so glad you are straight forward with the dr. You have to be to get anything done. Good luck,

    • Anonymous
      September 7, 2007 at 1:32 pm

      Having another health distraction for 3+ months and loads of pain from my PDN I have just been cruising on here to take my mind off the pain in my feet.

      The ICD code is something new to me but your stubborn determination has rung a bell for you. Hope all goes well with getting approval for Rituxan. I can almost hear cheers from across the North Sea from here as when Allaug reads it she will encourage your hope.

      I have been responding to Dick S on his thread “Hot summer, bad for my CIDP”. He wrote: [QUOTE]My pain has been off the charts, both neurological pain and muscular type pains.[/QUOTE] and [QUOTE]My feet still suffer through the drawn up tendons. My feet fatigue in about an hour now. I used to be able to be on my feet at least half the day, now it is only a couple of hours. [/QUOTE]
      We’ve had a non-summer until recent days but I have had the same kind of deeper pain this year. You know about my mini-pressure fall triggers explanation. Have not been able to do real work in the garden for weeks.

      Hope the joint efforts of the oncologist and your rooting from mid-field (does that sound American?) works!;)

    • Anonymous
      September 28, 2007 at 10:52 am

      Disappointing news from the oncologist:

      Medicare turned down his request for Rituxan based on the diagnosis of paraprotanemia. They also turned it down for MGUS. As a result I had a bone marrow biopsy yesterday. It wasn’t as bad as I expected. The doc is trying to find evidence of Waldenstroem’s, which is a slowly progressing form of Non-Hodgekin’s Lymphoma. With this diagnosis, Rituxan will be approved. But even if there is no clear evidence in my bone marrow (often Waldenstroem’s presents initially without much evidence), he may be willing to give me this diagnosis anyway. I don’t want to get my hopes up too high. He does not always express himself too clearly.

      THanks, [B]Ken[/B], for the encouragement. However no cheers from this side of the ocean yet! I’m sorry to hear about your pain problems. I know it is so frustrating for you being unable to stay active. Hope cooler weather helps. Although my symptoms have been getting significantly worse in the past two months, I still have no pain. Finally got a wheelchair because of so much weakness and trouble walking. We will be heading to the mountains for our 30th anniversary today & hopefully getting away from all this medical stuff for a few days.

    • Anonymous
      September 28, 2007 at 12:02 pm


      Sorry to hear about your denial of Rituxan and for all the problems you’re having. I wish you good doctors 😉 and good health going forward.


    • Anonymous
      September 28, 2007 at 2:20 pm

      your docs can get well, ‘creative’? Not illegally so, but you know what I mean. That is such a bad, sick deal.

      Wishing really good things – like ‘accidentally’ falling into a trial or something…Truly – wish it to be…

    • Anonymous
      September 28, 2007 at 10:49 pm

      Norb and Carol-CONGRATS on 30 years!!!!!!!!!!:D Thats Wonderful!!!!!:)
      Norb, your dr can only be soo clear;) , it really sounds like he is doing his best to get you approved. Sometimes you have to fight for what you need, go for an appeal on the decision to deny you the treatment. Sometimes it pays to appeal, liken it to taking a dirt road as a shortcut vs the nice newly paved road, you get alittle dirty and go through some bumpy miles but in the end it gets you to your destination faster. I’m praying for you!
      Hugs to You and Your Beautiful, Young Bride:D

    • Anonymous
      October 3, 2007 at 1:41 pm

      :confused: 😀 this morning the oncologist told me that he was changing the diagnosis after looking at the results of the bone marrow biopsy. It is LDL or lymphoplasmacytic lymphoma, a slow-growing non-Hodgkin’s lymphoma. He said there was nothing to worry about since this was in the early stages. This does qualify me for getting Rituxan. He already got the approval from Medicare and my secondary insurance.

      More about this later. My lunch is getting cold.

      PS thanks Cheryl

    • Anonymous
      October 3, 2007 at 2:01 pm

      :confused: 😀 this morning the oncologist told me that he was changing the diagnosis after looking at the results of the bone marrow biopsy. It is LPL or lymphoplasmacytic lymphoma, a slow-growing non-Hodgkin’s lymphoma. He said there was nothing to worry about since this was in the early stages. This does qualify me for getting Rituxan. He already got the approval from Medicare and my secondary insurance.

      More about this later. My lunch is getting cold.

      PS thanks Cheryl

    • Anonymous
      October 3, 2007 at 4:07 pm


      I’m glad to hear that you got the medication, but I’m not aware of your dtr.’s
      diagnosis. Fill us in when you can.

      I do hope you are feeling relieved about getting the prescription.

      Miami Girl

    • Anonymous
      October 4, 2007 at 8:16 pm

      hi MiamiGirl, lymphoplasmacytic lymphoma is a malignant proliferation of B-cells in the bone marrow. There are many different types of lymphomas affecting different parts of the body. In my case it appears to be the underlying cause for my variant of CIDP with anti-MAG IgM, also called PDN or paraproteinemic demyelinating neuropathy. Here M type antibodies proliferate out of control and attack a component of the myelin. From the way I understand the entire process. I don’t think that lymphoma can be the underlying cause for regular CIDP. As a matter of fact, to this date a cause for CIDP has not been found. There are, however, theories which have not been substantiated.

      Actually, who first considered lymphoma 2 years ago was Dr. Quan at the University of Colorado Hospital in Denver. She wanted to rule it out and sent me to an oncologist at the same hospital. For one reason or another he decided that there wasn’t anything. A few months ago I switched to an oncologist here in Fort Collins. When I walked into his office I told him right away I wanted him to diagnose non-Hodgkin’s lymphoma because I wanted to get Rituxan. As I mentioned earlier, he changed his diagnosis to paraproteinemia in order to get approval for the bone marrow biopsy.

      Today I had a PET/CT scan of the entire body to rule out metastatic cancer. He changed the diagnosis once again to code 202.80 or “other lymphoma, malignant, unspecified location”. He also ordered another round of five days of IVIG. Just to be on the safe side. I started it today. I will be done Monday. Tuesday I will meet with a physician assistant for “Chemo Education” who will explain to me the procedure for Rituxan infusion. I will get it once a week for four weeks. Actually, Rituxan is not chemo but just treated as such. It is a humanized antibody from mice targeting all my B-cells tagging them for removal. It is relatively safe. Hopefully, that will get rid of the misbehaving ones and the new ones will be only the good kind.

      Carol thinks I’m crazy to be happy that I have cancer. But I do not believe that it is serious and I hope Rituxan will take care of it and my CIDP symptoms at the same time. I read that this type of slow growing lymphoma tends to come back after a year or two requiring new treatments with Rituxan.

      Like they say in politics, I’m cautiously optimistic.:D

    • Anonymous
      October 4, 2007 at 8:50 pm

      Hi Norb

      Yes, I also read that it can come out of remission, but sometimes not for years and
      years. They give you more treatment and it’s controlled again.

      However, what I read, sounded pretty good as far as controlling it at the
      early and mid stages. Yes, I would be glad that the oncologist found this.

      Maybe, let’s hope so, that the two will go into remission with the Rituxan.
      I had no idea it had to do with the IgM…that was a shocker when I saw
      some information on it. Wow.

      So the antibodies of mice, synthesized for humans, will help take out all of
      the abundant bad B-cells? That is really interesting. Don’t take this wrong –
      But, I hope you don’t suddenly have a need for cheese…Sorry, bad joke,
      I’m just trying to raise your spirits.

      It does sound good that they caught this in the early stages, as I said before
      the prognosis sounds very positive to put this in remission.

      When I first read about it, saw the association to cancer…well, I felt bad.
      Further reading, it was shown to be something that could be controlled. I
      was telling my sister about your diagnosis and we have a family member
      who has had the same thing for years. He’s a professor at LSU and still
      teaches there. I don’t know what he is taking, heck, I didn’t know he even
      had it, there are no signs from him.

      I can understand your wife’s concerns – more tests, medicines, fear, is this a
      correct diagnosis, is it early in its stage, etc…on top of CIDP. That’s alot
      to digest…but, you know what? I, somehow, have a strong feeling that you
      are going to be just fine. I can’t say why, I don’t know why…I just have
      this feeling, that you are going to conquer one or the other. You seem very
      strong emotionally and that’s a very positive aspect to have. 😀

      Keep us informed about how your doing and feeling…we care and want the
      best for you.

      Sorry again about the cheese joke…:(

      Miami Girl

    • Anonymous
      October 5, 2007 at 1:56 am

      OOOHHH Norb, My heart aches for you and All the problems you are having. Its not fair!!! You don’t need more health issues, you just needed Rituxan!:( I’ve got your back my friend, what you feel, I feel, when Carol needs a break-I’m there to lend you a hand or an ear. Stay Positive! Rituxan will do for you what it did for my fil-wiped the cancer off the board along with his ra! only it will be your CIDP/PDN being sent over the cliff!
      I can understand Carols’ feelings, my husband was/is feeling the same way, concerning my health issues. Please give Her a Big Hug for me.
      Its a Good thing You’re German!! Otherwise, I don’t know how one person could get through everything You have been/are going through!!;) My Grandma(All 4′ 4″) use to tell me I was All German-even though I am only part, because I am soo stubborn and I never give up and I won’t give in to problems. You’ve got good blood(so to speak;) ) running in your veins-Never Give Up and Never Give In!!
      Huge Hugs coming Your Way! I think we need to see more Brags!!:)

    • Anonymous
      October 5, 2007 at 2:12 pm

      You both made my day with your posts. What would I do without you two guys. And about the cheese joke, we both laughed. I always try to keep a sense of humor kind of like you with your decorated wheelchair, Cheryl. Actually, once I start getting Rituxan I’m planning to post a photo of me with Mickey Mouse ears and call it one of the side effects the drug company doesn’t want to talk about.

      Tuesday I am going to ask for copies of my records when I meet with the PA for chemo education. I’m anxious to see the lab report for my bone marrow biopsy and how significant the results really are. The oncologist is one of “them foreigners”, from Italy. I never know whether he’s actually answering my question or just thinking out loud. He seems to process a lot of things talking out loud. Like when he decided that I should be getting IVIG even though his going to give me Rituxan. “Since Rituxan is going to kill off the B-cells and suppress the immune system, the IVIG is going to give him extra protection.” We both like him a lot.

      Well, time for my nap. After that it’s back to the hospital for the next round of IVIG.

    • Anonymous
      October 5, 2007 at 2:19 pm

      Norb you have my sympathies, you certainly have been through a lot. I just got caught up on your thread and I’m shocked to hear about the lymphoma diagnosis. One because I hate that it is happening to you, two because it’s something they looked for in me because of the symptoms. I believe the bone marrow biopsy would have caught it so I’m not worried about myself but I am curious as to what made them finally figure it out for you.

      Good luck with your treatments Norb, I’ll be waiting to hear the results of your Rituxan.


      P.S. Did you ever get the frogs? 😀

    • Anonymous
      October 5, 2007 at 2:52 pm


      I am sorry you have yet another diagnosis…especially one containing the word malignant. I’m glad you are getting the treatment you’ve been after and if anyone can overcome a bump in the road, it’s you. I have admired you since the first time I found this site. You are determined and intelligent and kind. You have a great wife and you will be just fine ! If anyone is going to figure out a way to beat CIDP, it would be you. 🙂

      hugs and prayers are with you all over the country, including another from Nebraska !

      take care,

    • Anonymous
      October 5, 2007 at 5:07 pm


      Whew!!! I’m glad that you have such a good sense of humor…I’d be really
      laughing hard to see the picture with your mouse ears on.

      I called my half-sister in S.C. and her husband had lymphoma. She said that
      it was diagnosed into the second year of their marriage…he also had a bone
      marrow test. She can’t remember the drugs, but he did go through chemo.
      They have been married for years now…he hasn’t had one problem since.
      It went into remission and hasn’t come back…

      Your doctor makes sense, kill off the b-cells, shut down the immune system,
      therefore not prompting anymore production, then start you on IV to regulate
      the immune system through balance. I wonder if your IV will be short-termed
      until the Rituxan kicks in or will it be part of the cocktail. Either way, it does
      sound like your doctor is on top of everything.

      You will conquer this…

      Keep us updated on how your feeling…don’t forget the picture.

      Miami Girl

    • Anonymous
      October 5, 2007 at 8:25 pm

      I don’t know if this is of any interest. I was d’x in 1994 with GBS. Then in 2001 my GP sent me to a Rheumatologist(spelling???) who after doing various biopsies dx’d me with Inclusion Body Myositis(IBM) (no cure-no treatment). Then I was re-evaluated in 2003 and dx’d with POLYmyositis not IBM. Since then I have been recieving Retuxan infusions 1000mg every 6 months. I’ve always wondered if that re-dx was the doctors way of insureing I would recieve the Retuxan treatments. By the way–I have regained some use/dexterity since I started treatment. I’ve also had no problem with Medicare/TriCare paying for the 5 treatments. Thanks for letting me sound off.

    • Anonymous
      October 9, 2007 at 5:48 pm

      Hi, it is finally happening. The next four Mondays I will be receiving after almost 2 years of trying the new treatment, Rituxan. Today we had to go through chemo education even so it is not really chemo, no hair loss and all those bad negative side effects.. I’m still a bit nervous because there may be some side effects during the infusion like nausea, fever etc. as a reaction to the foreign antibodies. This treatment should take care of the underlying lymphoma very quickly. If it does work the way I hope it will, the secondary problem, – which is not very secondary for me – the peripheral neuropathy, the numb feet and hands, the loss of balance, should take quite a bit longer to get better, probably several months. Today we also for the first time got a copy of the results for the PET/CT scan I had last week. There is no metastasis anywhere in the body. They discovered multiple calcified gallstones, however, and a remaining empty space in my brain, a leftover of the subdural hematoma I had in April. So you still can call me an airhead. 😀 The discovery of the gallstones is just an extra unexpected benefit of getting the PET scan and a heads-up. If I ever should experience excruciating pain in that area I’ll know what that might be.

      I’ll keep you all updated

      [QUOTE=ski86401]I’ve always wondered if that re-dx was the doctors way of insureing I would recieve the Retuxan treatments. By the way–I have regained some use/dexterity since I started treatment. I’ve also had no problem with Medicare/TriCare paying for the 5 treatments. [/QUOTE]

      I have wondered about that, too. I still have not seen the lab report of the bone marrow biopsy. I will get copies of all my records on Monday when I start treatment. That lab report will be the first thing I’ll look at .

    • Anonymous
      October 9, 2007 at 6:56 pm


      I’m so glad that you will soon be on Rituxan…that is good news. Very strange
      about the gallstones, so you never had any pain in your gallbladder? I still
      have a few of my gallstones when I had the gallbladder removed. The nice
      surgeon said some people make earrings out of them. That was really funny
      to hear…then he gave me a little plastic box that had 5 stones inside.
      At first you think that it’s disgusting, however, after looking at them, they
      look like crystalline nutmeg balls…and to think that your body created them
      over a long time – like a pearl – is amazing. No, I never made earrings out of

      I do hope the medicine will help you out without any side effects. Just don’t
      forget, if your nose starts twitching, your beard starts growing longer on
      the sides and you scurry around…well, sigh…you feel the need for some
      cheese…oh, know…the side effects…twitch, twitch, twitch…:D

      Miami Girl

    • Anonymous
      October 9, 2007 at 10:24 pm

      Great news Norb keep us posted


    • Anonymous
      October 9, 2007 at 10:40 pm

      Norb, You don’t have a cat do ya?!:D As for the empty space in your head-thats just your brain making room for All the info you will be absorbing in the future, you won’t be able to say your brain is full of information until that spot is filled in;)
      Keep up your Great Attitude Young Man! Hugs to both of you!:)

    • Anonymous
      October 15, 2007 at 8:55 pm

      Just a short update. I finished the first of four weekly treatments with Rituxan. It took about five hours for the 800 mL containing 800 mg of Rituxan, a one to one solution. Everything went well with no reaction at all, except see “on the lighter side, new thread unexpected side effects of Rituxan”.

      Since I tolerated it well, next week it will go a lot faster about three hours. The solution will be more concentrated.

      Cheryl, no we don’t have cats but see on the lighter side.