Hi fsoprano, and welcome to this site!

July 31, 2009 at 6:56 pm

You will find people to talk to here, who have gone through it all.
Anytime you have questions, just give a shout here, and people will reply.
There are some good people here, of all ages, (unfortunately, it hits kids as well).
But back to you…
You have to do a lot of reading to see what you have, (CIDP).
And you need to see what the normal protocol of treatment for CIDP is.
A very good place to start is the CIDP USA Foundation site:
There is a lot of very good information there. You really need to learn about CIDP, as I think you need to ask the neuro you now have, WHY THEY HAVE DECIDED NOT TO DO ANY TYPE OF TREATMENT.
You have been put on a drug that helps with nerve pain, (neuralgia).
It is NOT a drug used to treat CIDP–it is used for a symptom of CIDP.
Here is a website to go to, to learn about Gabapentin, (Neurontin):
Most of us here are on that drug, as it helps with the nerve pain, (I am as well, as I use to get what felt like electrical shocks in my spine, and would come on suddenly, and make me jump a couple of inches off the bed, as it was very painful, and would startle me).

It all comes down to you. YOU are the one that needs to gain knowledge of the nasty critter, (CIDP). YOU are the one that needs to write down your questions to bombard your doctor, and YOU are the one that needs to get answers as to why they have decided not to treat CIDP in it’s early stage, and to let it progress.

Like I said in the beginning, we are all here to give you some good advice since we have been through it. ANYTIME you have a question that the doctors are answering you, try it here, and I am sure you will get an answer or some advice.
I personally have been through ALL the normal protocol of treatments, and can tell you what they are like. I could go on about myself, but would rather you read up on this.
There is a yearly Symposium, where doctors and patients of GBS/CIDP meet, and the doctors discuss new developments and treatments.
Unfortunately, because this is a rare disease, there is not the super-research that is done on more well known diseases like MS, MD, and even ALS.
(By the way, MS and ALS are sister diseases to CIDP: MS affects the Central Nervous System, CIDP affects the Peripheral Nervous System, and ALS affects both nervous systems.)

And if you’re just plain having a really bad day with this–just rant and rave here…many have done that, and people really care here.

Welcome aboard this awful ride…