confusion about a few things
AnonymousJune 11, 2011 at 12:10 am
Hi everyone. I’ve gotten alot of info from this forum and yet am still confused.
Husband came down with GBS in Late Jan 2010 (no flu or swine flu shot, the only one in the house NOT to take them…)at that time they said it was a moderate case….no ventilation, issues in hands and legs…course of IVIG in hospital. Since then, while he is relatively young-49 and was in good health otherwise, progress VERY SLOW. In rehab oupatient all of the past yr-pt, ot, swimming. At first had used a cane but got worse AFTER hospitalization and since then, walker. Hands had made some progression, but feet not at all. About 2 months ago PT noticed he was getting worse in both feet and hands, like almost back to where we started…Now he is undergoing 3 month course of IVIG at home, 12 treatments, started in May. Currently, hands are better, feet not at all , tho we were told healing will be reverse of illness from up to down. Here are my questions
1) I am still so confused as to whether GBS can actually reoccur, or whether this was a relapse, or, as Dr. Latov, one of the best doctors in NY and recommended on this forum (thanks) now labeled him CIDP …for now…whatever that means. From the way his illness occurred it seemed to be GBS. Has anyone ever figured out, aside from how the disease comes on when GBS actually becomes CIDP…
2) Anyone experience this excruciatingly slow recovery where after a year there was such a backslide?
3) My husband has no other health issues except for thyroid which is being treated. Considering his was called a “mild” case…it is all very confusing as to why his improvement stopped. IVIG seems to be helping only hands. Any experience with post hospital IVIG that helped anyone recover faster after a downslide?
4) Does anyone know of a psychiatrist in NY/NJ who specifically has helped people with this debilitating disease? I have not seen posts on the forum about this.
Thanks everyone Alot of questions, if answers to any that would be of great help.
AnonymousJune 15, 2011 at 3:00 pm
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.
AnonymousJune 18, 2011 at 12:38 am
I will try to answer your questions. I am not a medical professional, so they are not authoritative in that sense.
[*]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.
AnonymousJune 25, 2011 at 11:14 pm
Thanks so much everyone for your help esp MARKens. My husband has taken about 8 treatments since April and will be done with IVIG at the end of August.
The good news is that his hands are much more functional…his fine motor skills have returned. He an now pick up and eat and apple, grasp cups, etc. His legs unfortunately are not much better, still tingle, still moves slowly with a walker.
We all must hope for better days. Dr. Latov, who is the best told us that tho much is understand, there are still alot of questions about GBS/CIDP which is why he does so much research.
Will keep you posted.
July 3, 2011 at 4:47 pm
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.
AnonymousJuly 5, 2011 at 11:19 pm
Hi Hedley and everyone else…my husband got 10th treatment of IVIG today, two more to go. Hands steadily improving, feet…well, he can pick up a leg at a time and couldnt do that before. So I suppose that is all good. Will be seeing Dr. Latov in a month or so at end of treatments. Tho we banter about it back and forth, and he had all the original symptoms of GBS, Latov did label him “chronic” and yes, thanks for reminding me to ask him why….some of you seem to think that GBS and CIDP overlap in treatment but from all my readings on these forums it seems that CIDP really is just that…chronic, as opposed to GBS which is “supposed” to come and go….thats why there is so much confusion. Even if he presented a yr and a half ago with GBS…if the diagnosis is then written as CIDP because he got worse, still confuses me as to what that means…Residuals? Another attack of GBS? (Though I keep reading here that this is rare)…I really hope to clarify this with the doctor who is tops in the field and let you all know. So confusing. At one point he said to me “this disease is so tricky, that even with all we know, your husband can be walking in a year, or five years…or never.” As we say in Yiddish…oy. We have to help each other because I for one was surely tricked in the beginning into thinking “wow this will come and go at least….” which it does for some, but not in my husbands case…will keep you all posted. Thanks for all the help.
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