Another possibility is a nerve biopsy. This is used in cases where the diagnosis is uncertain.

It’s an example of how insurance companies dominate treatment rather than attending physicians. I had a Blue Shield of California HMO. The day a neurologist diagnosed GBS (later changed to CIDP), he put me in the hospital. The next day I had the CSF test. It supported the diagnosis and the day after that I started IvIg treatment. I was very fortunate to be well insured when I needed it.

You don’t say what tests supported the CIDP diagnosis. If you had a positive CSF test, IvIg should have been approved promptly.

I’ll respond to your questions in order.

It seems you have already seen some improvement. That’s a good sign. It is not possible to predict how complete recovery will be, so you should just think about getting a little stronger each day when you are in rehab.

Your question about nerves should be rephrased: did you get treatment early enough to avoid axonal damage? Demyelination generally heals quickly and well, but recovery from axonal nerve damage is slow and may never be complete.

There are immune suppressants (I took one for a couple of years). Your neurologist knows about all the standard treatments. You should discuss the entire treatment plan and options, but leave it to the neurolgist to decide whether you need any particular medication.

Pain management can be difficult. I anted to get off pain meds as soon as possible and found I did not need them after I started recovery. Others here have more experience with this.

Xanax is a sedative used to treat anxiety. It does not have any direct effect on nerve healing.

You should see a neurologist as soon as you can if you suspect peripheral neuropathy, but an emergency department is not necessarily the place to go. Some cases of GBS are extremely rapid onset and call for emergency treatment. An ER will keep people so afflicted alive, but will not necessarily do the full neurological diagnosis. Most people with GBS have time to see a neurologist, who will decide whether hospitalization is required.

In my case, I waited a week or more before seeing my personal physician, and it was another week before he referred me to a neurologist. It was nearly a week before I could see the neurologist. When I saw him, he put me in the hospital immediately.

It is an emergency if you are getting noticeable worse daily, but usually in the nature of needing treatment within days rather than hours or minutes. For GBS and CIDP, generally earlier treatment leads to better results.

I also had a poor response to IvIg. I had a five-day loading dose, which seemed to slow the progress, but I continued getting weaker right after. Then I had another loading dose with similar poor results. Soon after that I was in nearly complete paralysis, at which time my treatment was switched to plasma exchange (PE). After nine PE treatments I started to improve, and was also treated with prednizone and CellCept. After five years I am nearly normal and off all treatments.

Patients do not all respond in the same way. Your neurologist must find the treatment which works best for you. I am not recommending treatment, but perhaps you should discuss PE with your neurologist.

It is known that GBS is sometimes associated with surgery. Presumably this is because the body is more exposed to infection, which is believed to trigger GBS.

I was quadriplegic not for four months, but for a few weeks, and paraplegic for a few months. My paralysis was complete in my skeletal muscles below the neck, but I was fortunate in not needing a ventilator. My first sign that recovery was beginning was when I was able to move one finger. I am know (five years out) normal above the knees. My only residuals are weak knees and mild pain in my feet. Don’t give up hope!

My advice is to get as many PE treatments as you can. Recovery does not start immediately after only a few treatments. I had nine and first noticed that I could move a finger after seven or eight.

When I became that weak a neurologis put me in hospital immediately and began treatments. Are you being treated for this? Your needs will soon go beyond an accessible shower.

I was originally diagnosed as GBS and changed to CIDP after a few weeks. I don’t think this is unusual. They are similar in most respects, so GBS will usually be the diagnosis until the pattern of symptoms suggests that CIDP is a better diagnosis.

The diagnosis is just a name anyway, not the thing. I am atypical under either diagnosis.