Negative Spinal Tap-Still CIDP?

    • May 28, 2016 at 4:03 pm

      My insurance is denying treatment with IVIG based solely on my negative spinal tap, despite the fact that my EMG and nerve conduction tests were positive for CIDP. I’m now putting together my 3rd appeal fight with the insurance. I would really love to hear back from others on this! Have any of you had a negative spinal tap, but still had insurance cover IVIG? My insurance is United Health Care.

    • May 28, 2016 at 5:51 pm

      The GBS/CIDP Foundation may be able to help you. Please fill out a support request here:

      Please read about the diagnostic criteria used to determine CIDP in the following document, you may find it useful in helping you fight the denial:

      Have they denied treatment with Plasma Exchange too? You may also want to look into programs offered by the IVIg manufactures such as CS Behring here:

      I know what you are going through, I fought a “not a medical necessity” denial from Blue Cross for nearly a year before finally prevailing. Good luck!

      • May 29, 2016 at 2:44 pm

        Thank you for the links!!! I will use the document for my fight; I’ve been searching for as many documents as I can find to support my case. The one you sent is fantastic!

    • jk
      May 28, 2016 at 6:42 pm

      I found a copy of UHC’s position paper. As you say, they take a hard core position including:
      “AND (d) Both of the following findings following lumbar puncture:
      i. White blood cell count <10/mm 3
      ii. Elevated CSF protein”

      I recommend you contact the Foundation for assistance with this battle. And, the answer is yes I did have negative spinal tap(s) as it it relates to i. and ii. above with coverage by insurance. However, my primary coverage was and is Medicare.

    • jk
      May 28, 2016 at 6:51 pm

      United Healthcare’s Apheresis Policy is here:

      and it includes this statement: “According to the guideline, plasmapheresis is established as effective for severe acute inflammatory demyelinating polyneuropathy (AIDP)/Guillain-Barré syndrome (GBS) and in the short
      -term management of chronic inflammatory demyelinating polyneuropathy.”

      I noticed when reading both of the UHC Policies that they mention ‘..state-by-state’ considerations. You might try contacting your State Insurance Commissioner for help.

    • May 28, 2016 at 10:31 pm

      I also have UHC, and they are difficult to deal with. I had a negative lumbar puncture in 2008, when my Neuro first prescribed IVIg, and they denied it. My Doctor had to send additional test results, and push for the treatment,but they finally approved it. Within months I was I was in remission and went 7 years without any type of treatment.
      Fast forward to July 2015, and once again CIDP rears its ugly head, and my Neuro request for IVIg is again denied. He requested a Peer to Peer conference call through UHC, and they finally approved a 6 month loading dose of IVIg.
      They do not make it easy for you though. Keep fighting.

      • May 29, 2016 at 2:28 pm

        Thank you so much for all your replies! Not only are they incredibly helpful,but they give me hope and renewed energy to keep trying.

        Charles, would you mind telling me what additional test results had to be sent. I’ve just started a leave of absence from work to work full time on getting my treatment! I couldn’t do both. I hope to get this settled soon and start on IVIG so I can get back to work. My neurologist set up an appointment for a second opinion with a neuromuscular specialist in California. We’re hoping that will be enough for my case. I’m so interested in your experience since you dealt with the same insurance with a negative lumbar puncture.

    • May 29, 2016 at 10:23 pm

      The internal grievance procedures used by our insurance companies are weighted against us! I didn’t take that route; I took my complaint directly to my State Department of Insurance (DOI) and filed a complaint with them directly against Blue Cross. Had I not done so, I would have probably lost my case or been offered a lesser settlement.

      The insurance companies hire so-called doctors (usually not those with actual practice experience, but with teaching credentials) to render “position papers” that support the insurance company’s denial of coverage. That unfairly stacks the deck against the consumer and most State’s know about this tactic. What State are you in? Some are more consumer protective than others are.

    • May 29, 2016 at 11:07 pm

      You are exactly right. I looked up the “Dr” that wrote the denial for the insurance company. She’s made her living working in the corporate side of health care. I was diagnosed 8 months ago and started seeking help for my symptoms 2 years ago. I don’t have any more time to waste. I live in Nevada. Any help is much appreciated!

    • May 29, 2016 at 11:52 pm

      Mickymarie,I can’t remember the specifics that my Neuro supplied, but I had an EMG and NCV along with my lumbar puncture. I was originally dx’ed with cidp in 2003 at Emory in Atlanta. At that time my symptoms were mild and I did not receive any treatment. I think my Nuero forwarded that original diagnosis as further support of my having cidp.
      I believe the Peer to Peer conference call allows the Doctor to discuss the case with a practicing Doctor. Once that happened my IVIg was approved. I live in South Carolina.

      I ended up not getting my IVIg through my UHC plan. I also have a CareMark / CVS pharmacy plan. Through my own research, because no one ever told me, Care Mark has a specialty Pharmacy plan that includes IVIg. I got my IVIg through CareMark. The condition is that you have to use their Home Health Service, meaning the infusions are done in your home, and they provide the Nurse to monitor and administer the IVIg. Though I was a bit apprehensive at first, I did not have any problems, and my nurse did a great job. I would do Home Health again. There was a $10,000 out of pocket difference by going through my Pharmacy plan instead of my UHC plan. You might want to see if you have that coverage. I hope this helps.

    • May 30, 2016 at 12:13 am

      I would suggest filing your complaint here:

      They can help with improper denial or delay in settlement of a claim. Nevada is very pro-resident and I’m sure they will support your case, especially since UHC has jeopardized your health by denying treatment coverage. This could put Nevada at risk of having to pay for a portion of your health services. They may also lose tax revenues because you can’t afford to pay your full taxes if you have to pay for treatments that should have been covered by UHC.

      It wouldn’t hurt to copy the State AG in an appeal/complaint letter suggesting insurance fraud or racketeering. If nothing else, it tells UHC you are serious and won’t take anymore of their guff.

      UHC, a multi-billion dollar public health company, is based in Minnetonka, MN and doesn’t pay Nevada taxes. They had gross incomes of $53 billion last year!

      I wish you the very best!

      BTW – I’m presently fighting one of their divisions (Symphonix Health) over false and fraudulent billing practices. I’ve filed a complaint with CMS and they have recently intervened in the matter. I told Symphonix I was also going to file a complaint with the FTC if I didn’t get satisfaction.

      It seems the insurance companies, who were out of control before, have gotten more out of control since the ACA was passed!

      • May 30, 2016 at 12:29 am

        Wow! Thank you Jim! I owe you big time! I’ll let you know how it goes 🙂

    • May 30, 2016 at 12:46 am

      I’m filling out the complaint now. Could you help me with what would be the best thing to wright in the space for “Detail of Complaint”?

    • May 30, 2016 at 4:37 pm

      Try something like the following letter (pardon my grammar, it’s just a shell) but word it your way and to convince them to take action in your case:

      Company: United Healthcare (UHC)
      My policy number: (insert your policy number)
      Date of Loss: (insert date of accident)
      Nature of Complaint: Failure to pay for treatment of serious illness under provisions of policy and further endangering my health and wellbeing
      Last Correspondence: (insert date of your letter to agent/adjuster); copy enclosed
      Documentation enclosed: letter from Doctor X MD addressed to (insert name of agent/adjuster)

      Dear Sirs, (or insert name of Insurance Commissioner)

      I hereby file a complaint against the above-named company, and adjuster, for the reasons stated above, as more completely set forth below. I request that you investigate this matter and take appropriate action to require my insurance carrier to comply with the terms if its insurance policy.


      I am an insured under the above-referenced policy, and I am entitled to payment for reasonable and necessary medical care under terms of the xxx provisions of said policy.

      My health began to decline (insert date) and I was diagnosed as having a rare condition called CIDP. As a consequence, Doctor X recommended a course of treatment called IVIg. This is the standard treatment recommended by experts to treat CIDP.

      My treatments are expensive and I cannot afford them without reimbursement or co-payment from UHC. The treatments have been denied based on out-dated acceptance of diagnostic criteria (or perhaps it’s really a revenue protection statement?). UHC’s failure to provide coverage has extended many months now. I work as a (insert job), and also have the usual chores at home. Sometimes after my CIDP flares up my work becomes extremely difficult for me because (insert some reason here), and I did miss some work because of pain and inability to (insert something here). I also had trouble doing my daily chores (ADL), and often found that I would suffer pain and (insert some condition here) at night or the next day if I would extend myself doing activities during the day.

      UHC Declines to Pay Medical Treatments

      On (insert date of their phone call or letter denying benefits) (inset adjuster’s name) informed me s/he was going to deny me benefits due under my policy. Specifically, she informed me that she was “discounting” a large portion of my doctor’s recvommendations because she (or a so-called mystery “peer review” committee or paid so-called Doctor) had concluded that Dr. X’s recomendations were for treatments that were not “reasonable or necessary” under an inconclusive diagnosis. This, she said, meant that the treatment costs fell outside of UHC’s obligation to pay me under its policy provisions.

      S/he explained that my doctor’s diagnoses are neither conclusive nor valid because his test results do not match their criteria for confirming the presence of the disease. I asked if what s/he was saying, in effect, is that there is no need to pay for any care, unless the diagnosis can be shown to have been valid (by meeting UHC criteria).

      Dr X has followed accepted industry established guidelines for confirming the presence of CIDP. These guidelines are readily available on-line from many renown medical sources and government endorsed institutions (cite some examples).

      Information and Rebuttal Furnished

      Doctor X furnished (insert name of agent/adjuster) full information to explain that his proposed treatments would help to restore my health, but not completely, and that UHC’s diagnosis criteria are non-standard and have no place in CIDP claims, and that many other medical treatments are made and paid for on the basis that they will just let the patient live a little better or longer, while there is no chance whatsoever they will “cure” the underlying disease.

      My rebuttal letter to UHC is enclosed. Why should the company have the right to determine what treatments I can have so long as the treatment will help me lead a normal life, as opposed to living in pain, reduced ADL’s, and risking the continuing loss of muscle function?

      We, the insureds, have full right of access to all reasonable and necessary medical treatments, and this is an arbitrary and capricious attempt to save insurance company money at the risk of jeopardizing the health of its own insureds.

      I mailed my letter to (insert name of adjuster) on (insert date of mailing), and now, xx days later, I have not heard anything from UHC.

      Action requested

      My health is at extreme risk because CIDP is known to have permanently disabled many of those afflicted. It seems to me that UHC has sentenced me to lead a lesser life so that they can continue to pay perks to their employees and stockholders. Since when have insurance company’s replaced medical experts in diagnosing our ailments? They have unfairly and wrongfully placed my recovery from CIDP at risk and jeopardized my long-term ability to lead a regular life. I want my treatments paid for under my policy.

      It is important to get this matter resolved, not just in my own case, but for others who will be victims of this tactic unless your office steps in and takes some action to make UHC comply with the law and adhere to its contracts with its insureds.

      I would be pleased to provide any additional information you may require.

      Sincerely Yours,
      (insert your name)

    • June 1, 2016 at 3:14 pm

      Incredibly helpful Jim!! I’m so grateful for all the time you put into helping me with this!

    • June 2, 2016 at 3:43 pm

      Hello. I have a different insurance co. but I also had a negative lumbar puncture. What I did have was the results from a diagnostic MRI (ordered by primary physician who based on the results referred me to specialist) that was done in addition to the bloodwork, EMG etc. done in later weeks. The diagnostic MRI showed significant damage and led to the diagnosis of CIDP BEFORE the neuromuscular neurologist even began doing his tests. I don’t know if you had an MRI of your lumbar spine but it did seem to help with the process of confirming diagnosis for the Neurologist and insurance company. Hope that helps. Best wishes to you.

    • June 7, 2016 at 1:36 pm

      I’m not sure this is the correct thread for this question so I apologize in advance, but I am really in need of guidance. I just met with a Neurologist from a major teaching hospital in Chicago who looked at two abnormal EMG reports that evidently show axonal damage but no indication of demylination. Therefore, she said that there is no reason for a nerve biopsy or spinal tap and that I most likely have an idiopathic polyneuropathy with no known cause or treatment. IVIG would not help me; only pain medication.

      My symptoms are progressing where I am now only able to walk very slowly and only for a few blocks. Pain and weakness and muscle twitching and nerve pain in chest and abdomen, starting in hands and arms. I am in the 7th month since symptoms began.

      My follow up visit is scheduled for December. Would it be wise to get an opinion from a neurologist at one of the centers the GBS/CIDP recommends? Has anyone been helped by IVIG or other treatments for axonal polyneuropathy? Thank you for any help.

    • June 7, 2016 at 3:21 pm

      Yes, you should seek diagnosis from a Center of Excellence! You have three choices within a 300-400 mile radius of Chicago (Detroit, Rochester, and Columbus).

      Acute Motor Axonal Neuropathy (AMAN) is a variant of Guillain-Barré Syndrome (GBS). It is a rare variant but treatment options are available should you have that condition. Information about AMAN can be found by performing a keyword search on the forums here. If that were what you have, it would be better to post further comments under that forum thread. You can read more about AMAN here:

      Other GBS variants are described here:

    • June 7, 2016 at 3:30 pm

      Thank you for the prompt reply! I’ll follow the links to learn more and also contact one of the centers of excellence. I am very appreciative and once again hopeful. I am not sure which is more difficult – the symptoms or the search for diagnosis!