how many of you had an acute onset
AnonymousAugust 19, 2009 at 12:22 pm
I am just curious how many of you were diagnosed with gbs in the beginning. does this mean I did not have gbs but rather an acute onset to CIDP. the two are considered distict am I correct? also how many of you with “the acute onset” recovered quickly. I went from full paralysis that did not include my autonomic system, to walking in one week. I left the hospital in two weeks and did not need pt. I was back running on the tred mill in one month. everyone is different but I wonder if those who had mild GBS, if there is a higher probability of it really being CIDP.
AnonymousAugust 19, 2009 at 1:36 pm
From what I understand people say GBS stand for Get Better Slowly. I’ve read that most people with GBS take longer to recover. If you have CIDP, get IVIG & then recover quickly that you are more likely to have CIDP than GBS. Although I’m sure there is some variation with that as everyone is different.
I would guess, & that’s just me being a mom who has read a lot, that you probably had acute onset of CIDP, it went into remission & it’s back again.
AnonymousAugust 19, 2009 at 3:18 pm
[QUOTE=tara74] the two are considered distict am I correct? [/QUOTE]
[COLOR=”DarkRed”][FONT=”Georgia”][SIZE=”2″]As I understand it, GBS and CIDP are two sides of the same coin.
As to whether it’s a mild onset GBS or acute onset CIDP, that’s up to the neuros.[/SIZE][/FONT][/COLOR]
AnonymousAugust 20, 2009 at 2:13 am
The difference between GBS and CIDP is that GBS is an acute disorder, while CIDP is chronic. What that means in real life isn’t always easy to delineate.
Generally speaking, GBS is a short-lived attack of the immune system on the peripheral nerves. The attack starts and reaches its nadir within four weeks. The patient plateaus, then begins a slow recovery as the nerves regrow. He may be left with bad residuals, but he doesn’t get worse and normally gets better. Early treatment will usually slow or stop the attack, reducing the damage and allowing for earlier recovery.
CIDP can start in one of two ways: either abruptly (acute onset) or slowly. The acute onset is often confused with GBS since they appear very similar at first. The difference is that CIDP, regardless of how it starts, continues to worsen after eight weeks. Treatment in acute-onset CIDP will often stop the attack, but once the treatment ‘wears off’ the patient will normally relapse.
AAR, it’s not unusual for acute onset CIDP to be confused early on with GBS, and if it is there’s no problem: treatment would initially be the same. And then the problem is determining if it’s CIDP or recurrent GBS.
Such a fun disorder!
AnonymousAugust 20, 2009 at 1:00 pm
Hi, I have CIDP and I had what I considered to be a quick onset of symptoms, not nearly as quick or severe as your situation though. It took 2-3 weeks from the first twinges of tingling/numbness/pain in my hands and feet to an obvious loss of muscle strength. After declining for 7-8 weeks, I got the CIDP diagnosis, and once I started on treatment I started getting better right away. I’ve relapsed and improved several times.
AnonymousAugust 22, 2009 at 8:51 pm
Started w/tingly toes, saw GP referred to a neuro, and 4 days before neuro appt it got so bad [spreading up past the ankles to the knees and the hands to elbows weren’t working too well either-all w/in a final 24 hour period] that GP said go to ER after a VERY VERY LOOONG wait, numbness & pain put me in the hospital for 3 days w/no diagnosis. The ‘on-call’ neuro wasn’t the one I’d wanted, and he decided that it was all in my mind [ignoring the progression of numbness up my legs to the torso]. A change of neuro’s after a couple of ‘second opinions’ [cheap in the long run] got me on the IVIG and I am grateful for those other doctors who believed me!
Soo it was less than a month to the hospital? A full year to actually get the diagnosis…do NOT give up!!!!!!!!!!!!!
My only other bit of advice? Don’t get scared? Get INFORMED! That way you can ask those questions that are rolling in your mind…keeping you awake and ASK the doc. I make notes on a steno notepad? Then reorganize them into about 5-7 short points I want to discuss w/the neuro-HE knows I mean business and therefore he is too…saves time for both of us.
I don’t [B][I]like[/I][/B] having such a chronic illness, but that doesn’t mean I can’t give it all my best to fight it and succeed to any degree.
Now? I’m gonna go get some lemons and make lemonade – anyone know of a SAFE sugar substitute?
Hope and good things for you and soon!
AnonymousAugust 26, 2009 at 8:35 am
Homeagain—Stiva—its all natural!!!!
Tara, I have acute onset, relapsing/remitting type. I had numbness and tingling for many years. the weakness in my legs would increase when I over did it at work or home chores. I had no dx for the symptoms except for f-wave disturbances. I kept the other stuff to myself until one night I had to call off work for a suspected pulmonary embolism. I went to sleep and woke up 2 hours later totally paralyzed from the shoulders down, with tongue/throat involvment, and minor facial droop. I recover to a less then normal condition with alot of residuals and autonomic problems only to relapse whenever. I have not returned to normal in between relapses as yet-but maybe someday!
I would suggest a skin biopsy, it will show if you have small fiber neuropathy-which can cause alot more problems then one realizes. Its relatively easy, painless and you get results quickly. My pcp did mine in his office and I sent it off in the mail to the lab and 2 weeks later had a dx. Its a small start, but its better then not knowing. Most everything in the body is controlled by small fibers. Now to determine what caused the sfn, always something to look forward to. Take care and never give up.
AnonymousAugust 27, 2009 at 10:44 am
my doctor mentioned skin biopsy. if it is to find out that my autonomic system will someday be affected, I dont think I could emotionally handle that knowledge. I would be on xanax 24-7. I would like to think that the fact that even when I was acute my diaphram was not involved, is a possitive sign.
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