Reply To: Fighting GBS

If the neurologist is inexperienced with the most severe cases of GBS, he should be consulting with a more experienced neurologist.

I have CIDP, not GBS, but it is a similar condition and because the onset in my case was relatively rapid, I was initially classified as GBS. I went through the ICU twice, for a total of about two weeks. The first time was when I continued to deteriorate after a five-day series of IvIg. I was scheduled for plsma exchange, but then my neurologist decided to try a second five-day IvIg treatment. I was out of the ICU only a couple of weeks or less when I began to slide again. Then I got pleurisy I was back in the ICU (via ER) in short order. By the time my infection was under control, I had completely crashed — paralyzed below the neck. I did not have breathing difficulties, however. This is less common with CIDP.

Then, because my response to IvIg was not satisfactory, and because of the severity of my condition, I was scheduled for plasma exchange again. I was apprehensive about it, but in my condition was ready for anything they thought would help. My fears turned out to be unfounded. I had a Quinton catheter put in my leg, but this was done under sedation and I have no memory of the procedure. I had the catheter for about three weeks, during which I had nine plasma exchange treatments. I never experienced any pain or even discomfort from the catheter or procedure. I started recovering my strength after about six or seven treatments. The catheter was removed without sedation, but it was entirely painless. I spent eight weeks in rehab before I was able to go home in a wheelchair. A month or so later, I was able to get around without a wheelchair. Progress has been slow and steady since. It is almost two years now since the onset of my symptoms.

Your brother will get through this, and there is a good chance that he will make a good recovery. My feeling about plasma exchange is that it certainly seemed to help me, and if they are going to install a port for it, you might as well get as much use out of it as you can. Five treatments is typical, but I believe that having nine helped me recover more quickly. There is no way to know, however.

Every person’s experience is different, but the first sign of recovery for me was being able to move one finger independently of the others. Pay attention to details of function, and notice when function improves.

I do take medication, but this applies to CIDP only.

He is fortunate to have your help and support, and you should reassure him that people do recover from GBS and often make a full recovery.