confusion about a few things

I had GBS in 2000. IVIG did nothing to slow the progression. I got to the point of being hospitalized. I was then treated with plasmapheresis (PE) and I began to improve toward the end of the treatments. It was one treatment per day every other day for a total of 7 treatments. I was well enough after that to go home and was progressing nicely and had even begun to walk without assistance. I remember walking Christmas day. I relapsed 3 days later and was actually in worse condition than before. Complete paralysis from the waist down, partial loss of hands, droopy eye and face and just all around weak. PE was started again and I began to improve again. It seemed as if I improved quicker with the second round. The GBS was at least stopped and I began my recovery. I would say it was at least 18 months before I could say I felt normal again.
The key to my recovery was the medical attention I received by seeking out those who knew what they were doing. Don’t rely on the local hospital if you aren’t near a major metropolitan area. My hometown neurologist had never seen it. The big city neurologist had seen dozens and dozens of cases. He treated me confidently and reassuringly.
CG

Triplets6,

I will try to answer your questions. I am not a medical professional, so they are not authoritative in that sense.
[LIST=1]
[*]Can GBS recur? Yes, it can. Typically, though, for it to be considered a recurrence, you must have recovered a plateau and maintained it for a period of time (undefined).
[*]Is the recovery was very slow and then there was a backslide, the diagnosis, as Dr. Latov has done, would generally be changed to CIDP.
[*]CIDP comes in several forms. Your husband may have a relapsing-remitting form in which he does not fully recover after a relapse. Or he may have additional damage to his feet that his hands did not suffer. In that case, it will take time (a long time, perhaps) to achieve full recovery.
[*]No help here.[/LIST]The difference between GBS and CIDP is really a matter of timing. GBS is defined as reaching the most disabled point by 4 weeks. If the symptoms persist with no improvement for more than 8 weeks, the diagnosis is CIDP. My guess as to why Dr. Latov might have indicated “…for now…” is that some people have CIDP that goes into remission. It may also be that your husband has another form of neuropathy and Dr. Latov is waiting to see if the IVig leads to improvement more generally, helping to confirm a CIDP diagnosis.

IVIg usually, but not inevitably, works, but its outcome is variable. It may take all the way to the end of July for your husband to notice any improvement in his feet. He may not have any improvement at all by then, and then start to show some months from now. Or, he may start to show improvement tomorrow.

Godspeed he shows improvement soon.
~MarkEns

You will have to ask your doctor what factors led him to alter the diagnosis. You need to get a clear answer as to what the distinctions are between AIDP and CIDP. AIDP (GBS) presents with a rapid set of symptoms and a spinal tap is conducted to confirm the diagnosis at the time of initial diagnostic workup. Did your spouse receive a spinal tap? I was aggressively treated within 48 hours of onset. In seven days I was totally paralyzed. Again, ask your doctor to explain why he has has moved to CIDP. Do downturns or regression backwards always lead to redefining the illness? It is my understanding that the GBS patient runs a steady but slow upward line of improvement even though they may plateau for awhile. Again, it is my understanding that the CIDP patient does not present and incur a rapid loss of function. Your doctor is highly touted, but nobody has a good handle on this illness. All we can do is try to understand a little at a time. May you have good luck.