Jim-LA
Your Replies
-
February 14, 2017 at 3:48 pm
Clever shills?
February 13, 2017 at 9:07 pmBrokenbow, Did you have the normal GBS/CIDP tests? What is your diagnosis?
If it was GBS, that peaks in 4-6 weeks and you would be in recovery phase. Recovery times vary greatly and most posters here report still having residual symptoms after several years. If symptoms have not lessened since Nov 2016, it’s likely something other than GBS.
February 12, 2017 at 10:25 pmThe studies that are cited about getting GBS from Flu shots deal with the incidence of triggering GBS for the first time. That incidence is very low. However, there are essentially no studies that deal with the incidence of RE-triggering GBS in patients that have already had the disease. I believe the risk of re-triggering GBS is quite a bit higher.
More discussion on this topic and results from recent studies can be found in this thread:
https://forum.gbs-cidp.org/topic/metal-toxicityFebruary 12, 2017 at 4:41 pmA flu shot can trigger the immune system into producing antibodies that attack “self”. “Self” usually refers to the insulation surrounding the nerves called Myelin. When Myelin is attacked some of the nerves short out and we experience many weird symptoms. The condition can be responsible for various forms of peripheral or poly neuropathies (PN), including GBS.
My neuro recommended not getting flu shots post GBS/CIDP. Nobody knows with certainty that a flu shot will or will not trigger a new episode of the disease. My feeling is that the Flu is a lesser disease and easier to treat than GBS/CIDP. Getting the flu and being miserable for a few weeks pales in comparison to getting a recurrence of GBS/CIDP.
In my case, the risk of reactivating my CIDP, now in remission, was not warranted to me. I think it is prudent not to take the risk. But not everyone will feel the same and you must make your own decision.
February 8, 2017 at 3:24 pmCarla, I’m familiar with the area. I lived in Fairlawn while working in Barberton for three years.
The Cleveland Clinic has Neurologists specializing in CIDP:
http://my.clevelandclinic.org/health/articles/peripheral-neuropathies
Dr Kuenzler and Dr Levin (who I have no personal knowledge of) are CIDP experienced Neurologists who may be able to help you.
http://my.clevelandclinic.org/staff/6561-rebecca-kuenzler
http://my.clevelandclinic.org/staff/884-kerry-levinYou may wish to contact the GBS/CIDP Foundation liaison in your area for additional referrals:
OHIO (AKRON)
Kassandra Ulrich
Akron, OH 44301
(330) 724-2608
kassandra.ulrich@gbs-cidp.orgFebruary 7, 2017 at 10:31 pmWhere are you located Carla? Perhaps we can suggest some doctors who may have more experience with GBS/CIDP.
February 7, 2017 at 10:24 pmCarla, It seems the only valid test for GBS/CIDP you had was the NCV, and the accuracy of results is subject to the experience of the analyst. There are other tests that should be done to confirm or deny the disease. Please see the following publication for an overview of the diagnostic tests involved:
http://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2012/01/OverviewENG.pdfIf CIDP is confirmed from testing, I recommend 3-4 days of PE followed by a week of IVIg. But these are expensive treatments and your insurance will likely have to be on-board with the treatments. Too many insurance companies are denying the proven (yet expensive) treatments in favor of their profitability over our quality of life!
February 6, 2017 at 12:05 amI don’t have any first hand experience with a child having the disease, but I offer you these publications that may be helpful:
This one is more general and can give you a really great understanding about what to expect and what to do:
http://www.gbs-cidp.org/wp-content/uploads/2012/01/CareForChild.pdfThis one is more technical and can offer your doctor some ideas to better help him/her help your daughter:
http://www.gbs-cidp.org/wp-content/uploads/2013/02/Childhood-CIDP-2013.pdfYour daughter is young and can overcome this disease more easily than some of us older folks. I hope that that, coupled with the info in the cited publications, will give you and her an advantage to overcome this disease quickly.
January 27, 2017 at 6:54 pmYou may want to look into these two hospitals that are said to have good CIDP specialists:
Mayo Clinic Jacksonville takes the following plans:
http://www.mayoclinic.org/documents/commercial-insurance-plan-contracts-florida/doc-20203719John Hopkins takes the plans listed here:
http://www.hopkinsmedicine.org/patient_care/pay_bill/insurance.htmlThere is also the center of excellence in Tampa: USF Health http://health.usf.edu/medicine/neurology/patients.htm
You can get referrals from a GBS/CIDP Foundation liaison in your area. Please find ones here to contact:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdfJanuary 22, 2017 at 4:34 pmIf you signed a waiver you can claim you were pressured into it by CIGNA as the only way you could get consideration for treatment, ignorance of your rights under Ill law, and unfair treatment because you were not properly advised of your options. In short, CIGNA bullied you to protect their profits.
If requesting an external review, tell them CIGNA forced you to have one through them and pressured you to sign some kind of waiver.
January 21, 2017 at 5:11 pmAdded forum search tag for “San Diego Doctors”
January 21, 2017 at 5:06 pmPlease contact the GBS/CIDP Foundation chapter nearest you for a referral:
http://www.gbs-cidp.org/wp-content/uploads/2013/10/GBS-Directory0613.pdfSome forum members have recommended this Dr:
D. Eric Collins
Associated Neurology Medical Group
365 Hawthorne Ave., Ste. 203
Oakland, CA 94609
(510) 834-5778January 21, 2017 at 4:53 pmWrite a letter (similar to the one I gave you the link to earlier) to the Illinois DOI here:
http://insurance.illinois.gov/HealthInsurance/HealthInsurance_InsurerDeniesClaims.aspOr request an external review here:
http://insurance.illinois.gov/externalreviewJanuary 20, 2017 at 9:46 pmHere is an old post that discusses PE vs IVIg:
https://forum.gbs-cidp.org/topic/plasma-exchange-timesAs far as side affects of PE goes, there are far fewer than with IVIg. PE is recommended for those that have had bad experiences using IVIg, and there are many more bad experiences from IVIg than PE. Dosage and infusion rates, along with what and how much benedryl, etc, etc to use before administering the IVIg… all come into play due to the less tolerable nature of the overall IVIg treatment process.
Yes, there is an increased risk of infection if one does not take proper care of the PE “port”. I had absolutely no issues with any kind of infection with PE, and I had several ports over 2-3 years. Installation of a port is more invasive that an IV, but not during or after PE treatments. I had all sorts of complications with IVIg (cuts, bruises, infiltrations, swellings, etc) as a result of being poked with a needle by people (RN’s at a Center of Excellence!) who didn’t really care and often brute forced the needle because my veins were not always popping out for them. I hate IV’s because of this experience! I’d rather have a port!
More importantly, I believe quite strongly I would be walking today if my first Neuro (a non-CIDP specialist) had me do PE before IVIg. Now, I recommend 3 days of PE before starting IVIg as a general rule.
I can’t look up your policy because CIGNA has it hidden behind their system. But you can access it because you are a member. use the link I gave you above to sign in.
January 19, 2017 at 11:27 pmI ran across a CIGNA coverage policy that seems to make it easier to get Plasma Exchange (PE) approved than IVIg. This is the other primary treatment for CIDP and many, myself included, got help from PE where IVIg did nothing for them.
https://www.cigna.com/assets/docs/health-care-professionals/future_coverage_positions/mm_0153_coveragepositioncriteria_plasmapheresis.pdf
