I think my dad has GBS again
AnonymousMay 3, 2007 at 11:00 am
My dad has had Gbs 2 times. They are now calling it CIDP only because they think it is coming back again. The neuro says he does not fit into either category. On set and severity look like GBS. Length between episodes and the severity of the episodes dont fit with CIDP. Only that it maybe occuring a third time makes them call it CIDP. I dont understand if there are any treatment differences. Both times he was totally paralyzed on a vent with his eyes taped shut for months. It was six years between episodes. Last time he was in icu and then shepherd spinal center for a year. The first time he got it he was 57. He will be 70 this month. He walks with a cane and can drive a car short distances. He has major short term memory loss and when we took him to the hospital on Tue. with numbness and tingling in hands and leg weakness he asked what does GBS do to you? He is so sweet and has such a positive attitude about life after all he has been through my mother and I cant bring outselves to tell him what might happen to him again. I am terrified. They started IVIG and will give for 5 days. In the past the IVIG and the plasmaphresis did nothing to stop it. I can only think that mabe it protected his nerves. I have been reading about all these drugs that people are mentioning cytoxin,Imuran, Rituximab ect… I have never heard of these. Could they be helpful for my DAD? What is this new book about GBS that is out? What is Dr. Perry’s full name? Where can I find articles.
AnonymousMay 3, 2007 at 9:23 pm
hi jill & welcome,
recurring gbs & cidp are different animals. i doubt the docs can tell which he has. i suspect the former. all the meds you mentioned in your post are not for recurring gbs. when you say neither ivig nor plasmapheresis [pp] has helped in the past, what do you mean? did he continue to get worse? when was the ivig & pp given with respect to each other? i will bring parry’s article abt pain & fatigue up near the top. look for it. join gbsfi. the latest issue of the commmunicator has a good cidp article.
AnonymousMay 4, 2007 at 1:20 pm
gene, thanks for your response.
The docs are calling it CIDP only because it is recurring. Neuro said it it unheard of to have GBS a third time. To me he does not seem to fit the CIDP category except for that it recures.
The first time he was dx with GBS 12 years ago he first noticed he could not pick up his coffee cup then weakness in hands and arms. Then weakness in legs and could not walk. symptoms started 9/20 back in hospital 9/30,10/11 pp starts had 20 some treatments back to back. 10/19 spinal tap confirms,10/24 icu breathing problems,11/16 on vent,( once on vent no more pp) 11/30 trach, fully paralized eyes taped shut,1/11 can focus eyes still cant blink, 1/20 5 days IVIG, 1/15 sorta smiled things started coming back very slowly.Went to Shepherd Spinal center in April to be weaned off vent and stayed 3 months. Came home July Quad in a wheelchair. Walked me down the isle(on Beach) with a cane next May 7, 1997. Good recovery but long. Mild nerve damage in feet.
6 years later 9/30 tingling in hands weakness in legs garbled speech. Went straight to hospital. 5 days IVIG strength improves, tingling improves. Sent home. Less than 1 week back in hospital a few days later in ICU on vent.27 pp’s. Spent around 5 months in ICU. Went to shepherd spinal center. I think It was close to a year before he came home. More nerve damage over entire body. No reflexes. Can walk with a cane and drive just not on HWY. Starts to have short term memory loss cant remember where he is . Major fatigue.
No symtoms for 6 years until this Tue. Has had 5 days IVIG tingling and numbness improved. Speech improved. Leg weakness only marginally. However, has a bloodclot from ankle to groin
Drs want to start on cellcept today. Neuro dx Cidp due to nerve conduction studies. The only nerve conduction study the have to compare this to is the one they did when he was first admitted the second time for GBS. The second time they vasillated between GBS and CIDP the whole time. These neuros say that every episode after the first GBS is cidp.
How do they tell gbs from cidp in his case and are there differnt treatments?
Do you know anything about how cellcept works and what the side effects are?
Thank you so much for your imput. I feel lost and like no one has experienced a case like his that I can find.
AnonymousMay 7, 2007 at 12:27 am
After hearing Dr Parry speak this past weekend at the MN Chapter meeting I feel I have a much better understanding of the two diseases. GBS is a triggered auto immune response in that you get it, it last however long its going to last and then you recover. How much you recover is very dependant on how much was injured. The myelin sheath, and I didnt quite understand this before is that it never completely heals/regenerates to its former self. The incomplete healing is what allows residuals to happen. When your body is stressed (from almost any possible reason) it can casue what is termed residuals. Its not the disease coming back, just the syptoms are present from the incomplete healing of the nerves.
CIPD is the continued attack of the body on its myelin sheath over a long period. It may be severe and then less and then maybe not attack for awhile.
But it never reallys quits. CIPD seems a lot more like MS.
I seriously recommend getting Dr Parry’s book.
Good luck and take of yourself while caring for your father.
AnonymousMay 7, 2007 at 11:55 am
Does anyone know if Dr. Parry’s new book addresses much about residuals? I see that he seems to have gained quite a bit of knowledge/experience about residuals, but I can’t tell from the book description if he addresses that in the book. I’m just trying to decide whether I need to spend the money on this book right now (as my current issue may be residuals flaring up, 8 years post-GBS).
AnonymousMay 7, 2007 at 7:20 pm
disclaimer – i am not a med doc
i say from what you describe that they can not DX recurring gbs from cidp. regardless, whichever ivig should be the first Rx tried. it is $$$ but the safest. if Dx is cidp then ivig once every 6 weeks as a start until the correct doseage is detremined at by trial. cellcept has side effects that you want to do your best to avoid. If Dx is recurring gbs, cellcept is incorrect Rx.
These neuros say that every episode after the first GBS is cidp. WRONG
you need a 2nd Dx. where do you live?
AnonymousMay 7, 2007 at 7:54 pm
I think I recall one (or more) people saying on here that they had GBS 3 times.
I only know a little about GBS and less about CIDP. But I’ve heard of someone with CIDP not requiring treatment for 6 years.
As the cause of GBS and CIDP remains unknown I am always a little surprised to hear of a doctor that ‘it can’t do this’ and ‘ it can’t do that’. I often wonder on what facts there information is based on. With GBS being rare, I doubt that most doctors can say there information is based on experience.
Some of the medical opinions I have heard are:
GBS doesn’t strike twice – well that suggests it is a virus and we acquire immunity. Well that idea has a few holes in it.
The chances of getting GBS a second time are very low – that means there is a chance.
The chances of a GBS’er getting GBS again are the same as those of a person who has never had it – i.e. the same as before any of us ever got it the first time. This is little comfort – cos we got it! And, some have had it more than once.
I would be concerned about a doctor who said ‘it can’t be that’ because that means the doctor is ruling it out (ignoring it basically) and it is ruled out based on – what exactly?
As to residuals, I still remember being told that x, y and z could not be to do with GBS because it had left my body long ago. That, to me, is a bit like saying the scars on a face cannot be do with acne because the acne left long ago.
Now if the second sentence of the above paragraph sounds daft, so does the first sentence. Doctors know what acne can leave behind, but not too many of them seem to know what GBS might leave behind.
Oh, short-term memory loss. Haven’t most of us experienced that after GBS? Although I believe that generally it seems to improve with time, and practice – okay I don’t know that for certain but I am going on what I have read here and my own experience. It also seems to go with age for many.
AnonymousMay 11, 2007 at 12:32 am
they are calling it cidp based on the neuro saying gbs does not come back a thir d time. He responded to the ivig in that he got some relief from the symptoms. He is still very weak in his legs. He insists on walking up 2 flights of stairs to sleep in his bed. My fears are he weighs 200 pnds and my mom 130. If he falls he takes himself down and my mother. If he wakes up and cant walk or breathe how will she get him to the hospital?
They are planning on ivig every 4 wks and cellcept. What if it is recurring gbs? the first time it took him longer than 4 but less than 8 wks to plateau.Then stayed thered for months. Sounds like new dx of sidp. 2ng time he fit into the gbs time frame. This time dont know yet since its been 3 wks.but r saying cidp. very confused. Especially abt treatments.
Neuro says he studied under some dr. in maryland who he says is at the forefront and wants my dad to see him. What to do?
May 20, 2007 at 11:47 am
I know GBS can recur since I have had it three times and possibly four. When I was a child my legs were very weak. I never was treated for it since there was no diagnosis or treatment in 1948. I was diagnosed with GBS in 1958, in 1989 and again in 2002. I was never on a vent. I still have trouble with steps and weakness. My doctor never did suggest I had CIDP.
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