You may find some helpful info about pain options in the following thread:
https://forum.gbs-cidp.org/topic/pain-and-weakness-together

The tools available are too numerous to list here. They run the gamut from eating tools to dressing to hygiene to walking or wheeling. Some ideas can be found on-line at websites such as:

http://www.1800wheelchair.com
http://www.adaptivemall.com
https://www.therapyshoppe.com

One of the best ways to learn about what’s new is to attend an AbilitiesExpo. I just attended the one in LA and learned many new things.

http://www.abilities.com/expos
http://abilitytools.org

Now get that degree, go out there, and help those of us who may need assistance!

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.

History-Diangnosis

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)

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.

I think it would be highly unlikely that a new Doc would accept results and treatment recommendations from another Doc. They usually re-run all the tests and then recommend their own treatment programs. The State of Florida has the worst reputation for this and has frustrated many forum members. i hope you find an exception to this trend.

Plasmapheresis and Plasma Exchange (PE) are similar, but very different. PE is usually recommended for CIDP. If it wasn’t PE, that could be why you had no response. The main difference is the tissue depth/penetration and the thoroughness of the cleansing process of PE.

I had about 80 PE’s in total to take out the antibodies that were attacking “self”. After that was taken care of, IVIg worked to keep my system from creating more bad antibodies. IVIg alone, won’t remove bad antibodies already in your system, that’s the job of PE.

One form of chemotherapy I’m aware of that has been proven to help CIDP is Rituxan. There was a clinical trial using Cyclophosphamide but it was withdrawn:
https://clinicaltrials.gov/ct2/show/NCT01236456

However, some evidence exists supporting its use to treat certain types of CIDP:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635

I’ve been taking 1200MG per day and it seems to help me. Others have reported a return of minor symptoms when they discontinued it. The symptoms went away when they restarted taking it.

Not all ALA is alike; I researched it and found the one here that I take:
http://www.supplementwarehouse.com/viewitem.asp?idproduct=162545