Reply To: A friend needs help!

November 6, 2012 at 1:48 pm

CIDP is now considered a separate condition from GBS. The distinction can be difficult to make in some cases.

I don’t see the point of doing only one PE treatment. If you are going to get a catheter installed for it, you might as well get some use out of it. A single treatment is not 100% efficient, so multiple treatments reduces the fraction that is left after earlier treatments. It seems like cost-cutting to me. Much treatment is based on what insurance is available and what it will cover.

I don’t know anything about an “axonal type” of GBS. There is always demyelination, and in severe cases there can be some axonal damage as well. I have CIDP (but similar to GBS) and have axonal nerve damage in my legs. Despite that, I have made a good recovery and can now walk without assistive devices (but not 100%).

This is a sad story. The only advice I can give (not being a doctor) is to find the best neurologist available and get another opinion. Generally, earlier treatment leads to a better recovery, and it is already late. My feeling is that my PE treatments were crucial to my good recovery, but I don’t know whether they would help if done much later.

If there is axonal nerve damage (I expect they know that), recovery will be very slow and likely incomplete. As for the ventilator, I have no experience with that. But I have read of severe GBS cases in which a person was in that state for a long time, then eventually recovering. You should always hope for improvement and seek the best treatment you can get, because three months is a short time for this disease.

My thoughts are with you. Try to keep up hope.