Reply To: A few questions? New and scared

First thing is a good diagnosis so the doctors can confirm what you have. Once the diagnosis is complete, a treatment program can be put in place. Everyone responds differently to treatments and residual symptoms can last a very long time for some.

Have you had nerve conduction and velocity tests? Did they test for elevated protein levels in your spinal fluid? Have you had any treatments with IVIg or Plasmapheresis? Are you taking any Immunosuppressant medications such as Prednisone?

If you recently came down with symptoms, it may be GBS. GBS usually peaks in the first 2-4 weeks, and then gradually fades away over several months, or longer. Body functions return slowly over this time, but may not return to pre-GBS levels in some cases. GBS is not likely to reoccur after its initial attack (RGBS is extremely rare).

CIDP may be suspected when GBS does not seem to fade away quickly enough. There are other diseases that contribute to peripheral neuropathy and your doctor must rule these out to confirm a diagnosis of CIDP. Immune-Mediated Small Fiber Neuropathy is a treatable condition that can mimic GBS or CIDP. Lewis-Sumner and MFS are other variants and symptoms can be very similar to CIDP.

CIDP damages the Myelin sheath surrounding the nerve fibers. Myelin is like the insulation on electrical wire and without it; the nerve signals short out and don’t reach their destination. Myelin can grow back at the rate of 1 millimeter a day, which is only 0.0032808 ft, this is extremely slow but there has been little that can be done to speed up the process. Unlike GBS, recovery from CIDP can be very slow and many of us never get back to where we were physically before being stricken with CIDP.

There is a newer alternative to the traditional IVIg transfusion – Subcutaneously administered IVIg does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Use of this method would have less impact on your work schedule, maybe no impact if you can administer it yourself. Learn more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

My CIDP has been in remission since 2009. Others on this forum have reported great progress on beating the disease and some feel cured. According to a recent survey only 5% of CIDP patients end up wheelchair bound. Put down those fiction books about CIDP horror stories and read the survey results here: http://www.gbs-cidp.org/topic/patients-survey-results-into-gbscidp

It is normal for each of us to feel scared while not knowing exactly where the disease is taking us. I hope your anxiety lessens as you learn more about GBS/CIDP and the possible outcomes. I especially hope you get well quickly.