Please be aware that CIDP is almost always preceded by GBS. GBS is the triggering disease in the majority of these CIDP cases. GBS itself is often triggered by H1N1 and other “flu shots”. Making this connection is vital in pursuing a complaint against the NCVP.

There is a recent NVCP amendment in the works at the Health Services and Research Administration (HRSA) here:
http://www.hrsa.gov/advisorycommittees/childhoodvaccines/meetings/20160603/seasonalfluvaccine.pdf

This amendment, if adopted, will give CIDP sufferers more rights to make claims against the NVCP program.

A description of how the NVCP process works and costs ($400 filing fee) is here:
http://www.hrsa.gov/vaccinecompensation/resources/84521booklet.pdf

The onset date is the date following your Flu shot that you first started feeling GBS symptoms.

IVIg Side Effects:
It is fairly common for patients to experience headache (which can be mild to severe), stiff neck, and fever during or shortly after an infusion. This is called aseptic meningitis syndrome (AMS). These symptoms are manageable and can be minimized or prevented by infusing IVIG very slowly. Patients may often feel fatigued or flu type symptoms for a day or two after their infusion.

If the dosage of IVIg may be hard for you to tolerate, ask your doctor to have it reduced or consider SCIg as an alternative treatment. SCIg does what IVIg does treatment-wise with less possibility of AMS

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.

I wish you you the best in dealing with this awful affliction.

cvramirez, You have a tough case. Sometimes IVIg takes awhile to produce results. However, I did not work for me and there are many it hasn’t helped. I suggest you look into Plasma Exchange and Rituximab treatments.

tgriffen, The closest Center of Excellence to you is in Los Angeles (there are 3 in LA area):
http://www.gbs-cidp.org/get-support/centers-of-excellence-2

Others on this forum have had good things to say about the following Neurologists at Scripps:
https://www.scripps.org/physicians/5188-gregory-sahagian
https://www.scripps.org/physicians/8057-geoffrey-sheean

The GBS/CIDP liaison in your area may have other good referrals:
CALIFORNIA (SAN DIEGO)
Lizz Russell-Parker
San Diego, CA 92102
(619) 750-8778
lizz.russell@gbs-cidp.org
or
Julie Jukich
San Diego, CA 92108
(619) 218-6033
julie.jukich@gbs-cidp.org

Good luck!

Please read the following brochure to help you determine if you might have CIDP:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/CIDP.pdf

Can you tell us your location? We may be able to offer referrals to specialists in your area.

VICP is for U.S. citizens only. The NC/VS can be enough if results are not marginal. Else, you might have to test for elevated protein too.

GBS 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.htm

The 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.