Jim-LA
Your Replies
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January 19, 2017 at 11:15 pm
A summary of CIGNA’s general CIDP criteria is here:
https://www.cigna.com/healthwellness/hw/medical-topics/chronic-inflammatory-demyelinating-polyneuropathy-nord281It is based on a document developed by the National Organization for Rare Disorders, Inc. The full document is available to CIGNA members at:
https://my.cigna.com/web/public/guestHowever, individual plans have different restrictions and criteria for coverage qualification.
January 19, 2017 at 10:50 pmCIGNA has many plans (individual plans, family plans, business plans). Which one do you have exactly and in what county? As an example, CIGNA appears to have 15+ Individual Family plans, each has a different name and number.
January 19, 2017 at 2:35 pmMarvin, You don’t say what insurance carrier policy you have. Aetena’s current criteria for pre-certification of treatment with IVIg or SCIg can be found here:
http://www.aetna.com/cpb/medical/data/200_299/0206.htmlYour Neurologist must show you have either GBS or CIDP to be pre-certified. Use of the proper ICD-10 coding can help get your prescription approved as medically necessary.
Several other appeal options are described here:
https://forum.gbs-cidp.org/topic/negative-spinal-tap-still-cidpIf you can give us the exact name of your policy, maybe someone in these forums has experience they are willing to share with you.
January 17, 2017 at 1:32 pmCIDP can be a difficult affliction to diagnose exactly. Even assessing the results of an NCV is a bit of an art. Usually, all the tests must be made to confirm the presence of CIDP. Neurologists that have specialized in treating CIDP know this and the signs to look for. Have you had the Cerebrospinal fluid (CSF) tested for elevated CSF protein? Other tests can be found in the following publication and may help you and your doctor better understand the disease, its variants, and how to treat it:
http://www.gbs-cidp.org/wp-content/uploads/2013/02/AcuteCareICU13.pdfBest of luck!
January 13, 2017 at 4:59 pmDO NOT WAIT! GBS/CIDP is a very difficult disease once it has damaged your myelin and possibly your axons. I’m in a wheelchair because they didn’t get proper treatment for me soon enough when I became afflicted.
Read the following then go back to the ER and get help:
http://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdfJanuary 11, 2017 at 9:05 pmI don’t know how funny this is, mostly sarcastic I think, it’s one of my pet peeves though.
I have a power wheelchair and use it to drive from my house to the supermarket, about a mile away. When shopping, I never can reach anything on the top and bottom shelves (without an awkward reach tool). Have you noticed they always seem to put the heavy items on the top and bottom shelves, in an ADA compliant (supposedly) store? So frustrating!
I have found that supermarket employees, even those stocking the shelves near me or manning the surveillance cameras on every aisle, won’t go out of their way to help me, or even ask if I need help (well, on RARE occasions). Shopping is one of those experiences those of us with CIDP related disabilities must tolerate if we wish to eat lol!
So, I usually wait until a kind neighbor walks by and politely ask them to get the item for me. Most try to help as soon as they see me trying to grab something out of my reach. I always shower them with praises for their help!
When checking out after shopping, the clerk typically asks me, “Do you need help out?”. Depending on my mood and my experience trying to get things from their shelves, I may say ‘yeah, I need help outa this life’ or ‘can you drive me home’ or ‘can you hang the bags on my wheelchair so I won’t tip over’. Sometimes, in a foul mood, I respond with ’what do you propose’ which usually gets a blank stare and/or a stuttering, apologetic response lol.
OK, all this is fun for me, but probably not for store clerks. I bet others here in the forums can associate though, and I hope they get a kick out of my sarcastic humor!
January 11, 2017 at 12:26 amYour symptoms are fairly common. I too had them, but a few more due to the severity of my GBS/CIDP/MFS complications.
If you start getting headaches, nausea, vomiting, myalgia, low backache, mild grade fever, and flushing following IVIg, you may have experienced Aseptic Meningitis Syndrome (AMS). This is a rare side affect of IVIg and can usually be overcome by lowering the infusion rate. Some people get relief with a little Benadryl (15-25MG) before or during the infusion.
More AMS info here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4370025
January 10, 2017 at 9:47 pmYes David, you hit on the key. Early treatment prevents deep nerve fiber damage. Meylin can usually regenerate, axonal damage is another story.
Don’t exercise beyond fatigue, this can place too much stress on already damaged fibers, causing a little more damage or hamper nerve fiber regeneration. Take it slow, let the body do its repair work. Get some baseline strength tests and ROM tests. Then you will be able to measure improvement over time.
My diagnosis was similar to yours GBS/CIDP/MFS. I’m still wheelchair bound due to too much axonal damage. If I had only started PE right away, I believe I would still be walking today.
Best of luck with your recovery!
January 4, 2017 at 4:12 pmGBS usually peaks in 4-6 weeks and then begins to improve. GBS is almost always a one-time event and will rarely reoccur. However, GBS can return as RGBS or in the chronic form of CIDP. There are other peripheral neuropathies/variants too that are similar. Here is a summary about the various autoimmune disorders:
http://www.nlm.nih.gov/medlineplus/ency/article/000816.htmThe length of time it takes to heal from GBS varies greatly by individual and the severity of demyelination. Residual symptoms may last for years after most of the healing is done.
If your autoimmune system is still producing antibodies that attack “self”, you may want to ask your doctor about trying Plasma Exchange (PE) treatments. This is the primary way of removing those antibodies from your system. IVIg, SCIg, and often Prednisone, will stop your autoimmune system from producing more of those antibodies, but won’t remove what’s there, that’s the job of PE. Another newer option is Rituximab. You can search these forums for more info about it.
Here is May 2016 article that covers the disease well. It may give you and your doctors some ideas of how to best help you:
http://emedicine.medscape.com/article/1172965-overviewAnother good publication is here:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdfI hope you get the treatment you need and get out of the hospital soon.
November 26, 2016 at 12:16 amHey Tim, I’ve been on Rituximab since early 2015, after having been stricken with CIDP in 2008. My last maintenance dose of Rituximab is scheduled for Jan 2017. Although I’ve experienced improvement, I still cannot walk and my wheelchair appears to be a long term need. I really hope you have found a solution that gets you closer to recovery. Best of luck!
November 25, 2016 at 3:15 pmThe drug is in Phase 3 Clinical Trials and expected to finish in 2018:
https://clinicaltrials.gov/ct2/show/NCT02494505You’ll also find a reference to it on page 9 of this GBS-CIDP publication:
https://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdfCellCept is the version of the drug that has often been discussed in these forums. You can do a keyword search to read those discussions.
Best of luck finding something that works for you. Let us know if you try this and the outcome.
November 19, 2016 at 12:03 amI had Pneumonia as a result of taking Prednisone for my CIDP. A year later, I was offered the same vaccine you were. My Neurologist (at a Center of Excellence) said there was a risk the shot would trigger my CIDP. This was because my auto-immune system already knew how to create anti-bodies that attack “self” in response to such infections, whether the vaccine was inactive or not at the time of injection. I opted to take no risk of CIDP returning. It has the worst downside potential for me. My feeling is that Pneumonia is a lesser disease and easier to treat than CIDP. The risk of reactivating my CIDP, now in remission, was not warranted in my opinion. But not everyone is the same and you must make your own decision.
November 10, 2016 at 3:48 pmMost on this forum seem to speak English and Google Translate doesn’t always produce good results for complex languages. You may find better help here:
I have MFS and can provide some info if you are able to converse in English. There are also many forum topics here that address MFS, but they are all in English.
November 10, 2016 at 3:42 pmrec60661, You may wish to look into Rituxamab treatments with your team. This has had some successes with axonal forms of CIDP. Here is a good article about it:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4561230This article reviews other treatment options:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635There are many forum threads here that address Rituxan as well. Here is one I was involved in recently:
https://forum.gbs-cidp.org/topic/rituximabHope this info helps.
October 30, 2016 at 12:13 amI am a wheelchair bound paraplegic since 2008 thanks to CIDP. The CIDP gave me a bonus form of restless leg syndrome. It’s a twitching, squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side affects from that drug, so I went off it.
What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. This works wonders for my RLS symptoms and usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.
BTW, Lyrica is the med most recommended on these forums for general GBS/CIDP related pain. More info about pain here:
https://forum.gbs-cidp.org/topic/pain-and-weakness-togetherI’m also taking the ALA (1200-1800MG per day) JK recommended. I use the one here:
https://www.luckyvitamin.com/p-6120-now-foods-alpha-lipoic-acid-600-mg-120-vegetarian-capsulesYou may wish to contact a local GBS/CIDP liason for a referral to a neuro in your area:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdfI hope you quickly get the help you need!
