AnonymousMarch 27, 2007 at 5:03 pm
Ok, I need you experts out there to help clue us in a bit.
My Mom was diagnosed almost 6 weeks with Axonal GBS (I’ve posted lots in another thread). She is still on the vent, but has regained movement in all 4 extremities and has even swollowed a popscicle today.
They did another round of IVIG yesterday, which we weren’t expecting, and never really got a clear cut answer as to why, except now they are saying they believe she is “chronic” and don’t want another wave of GBS to hit her.
Is this normal???? (LOL, well, as “normal” as GBS gets!!!) We had never even heard it being described as chronic or acute until a few days ago.
A physical therapist explained that with chronic, prognosis is veeeeery long and not good. With Acute, there is better chance for recovery, even if it would mean a wheelchair for the rest of her life.
Can anyone explain what all this means?????
AnonymousMarch 27, 2007 at 10:29 pm
The way I think of them is
[B]CIDP: [/B](Chronic Inflammatory Demylenating Polyneuropathy)
[B]GBS:[/B] also known as AIDP (Acute GBS) (Acute Inflammatory Demylenating Polyneuropathy)
[B]Acute:[/B] having a sudden onset, sharp rise, and short course.
[B]Chronic:[/B] marked by long duration or frequent recurrence.
If you break it down like that it has always been much easier for me to understand. It also makes it easier for me to explain the differences when speaking to people.
I hope that helps, it’s hard for me to guess which she has. The severity of her onset would suggest GBS, while having been in her condition this long seems to suggest CIDP.
AnonymousMarch 27, 2007 at 11:19 pm
I respectfully disagree about your last statement……:o
[quote]The severity of her onset would suggest GBS, while having been in her condition this long seems to suggest CIDP.[/quote]
I was diagnosed with GBS within 2 weeks of my symptoms starting and was on a vent for a day or two at the time of diagnosis. Was on a vent with a trach for about 6 weeks. While on the vent the only movement I could manage during the last few days was to move my hands, feet and blink my eyes. Many with GBS are on a vent for months sometimes but that does not mean it is CIDP.
AnonymousMarch 27, 2007 at 11:26 pm
THANK YOU so much for your definitions!!! I’ll show them to my dad. In your experience, is 6 weeks long to still be in the shape she is? She just seems to have come such a long way from where she was, even 3 weeks ago!
They suggested the CIPD when giving an explanation for doing another round of IVIG. They said it may need to keep being repeated every 2 weeks for a long time to come. I had never read that course of treatment anywhere, so we were kind of alarmed and shocked.
She is out of ICU now, they moved her approx. a week ago to a rehab type hospital where she spent an additional 2 or 3 days in ICU there, before moving her to a private room. This is a short term place though, with the main objective to wean her off the vent. Then she would be able to go to a nursing home/rehab center that would be able to care for her.
She’s still fiesty as ever and even though she still can’t speak due to her vent, she can tell a thousand words with an eye roll!! She’s also become pretty good at mouthing her words to us, and if we don’t get it, she starts mouthing the letters of the words till we get it.
I guess I need to go back now and read more about CIPD, not just Axonal GBS.
Is it true that they can make this diagnosis now or is more time needed to see how much she progresses? Someone told me that with GBS, at about the 3 month mark, it splits. You either conitune to improve (slowly or rapidly, but improvement nonetheless) or you remain the same after whatever progress is made by the 3 month mark, along with potential slippage in progress. She said only a rough estimate of 3 months can make the accurate diagnosis between acute and chronic. Is this correct information?
AnonymousMarch 27, 2007 at 11:47 pm
Oh boy, I have just written a long reply to you and lost everything 😡
To make it quick.
Your mom sounds like she is improving, most defenitely. Im not sure where or who told you about that 3 month mark, I am affraid that it is not correct. Many doctors also give a 2 year cut off mark, which is not correct either.
If your mother is improving, and by what you say, she is, Im not sure why they gave her IVIG because this is only supposed to be given if the myelin is being attacked, and that definitely does not seem to be what is happening to your mom. You will know if she is ‘relapsing’ if she gets WORSE. Little improvements at this stage can only be expected, specially if she is on a vent. In fact, some improvements seem so small that the patient sometimes gets despondent, but if you look back over a 2 week period and see that she can maybe move a finger, of toes or whatever, then that shows a definite improvement.
Im not sure I like the way they used the word chronic when she is still very much in a slow (but good) recovery phase – and normally, GBS is a very slow recovery. I have spoken to, and know many, many GBS patients that that were on vents for far longer, and their progress extremely slow – Please realize that in NO way does that mean it is chronic.
AnonymousMarch 28, 2007 at 12:38 am
the only correct reason to give more ivig at this time is if her body is still producing the bad gbs antibodies. assuming this is true it can be chronic gbs [cidp] or recurring gbs, 2 completely different animals. in order for her to have either she should show some decline. assuming it is not true, the odds of more ivig doing damage is minimal. sounds like they are not sure of the Dx & are prolly figuring to err on the side of caution. for the moment forget abt axonal gbs & the forever wheelchair thingie. they don’t know. granted her age is a minus, but her sex is a plus. keep her positive, it helps. take care. be well.
i typed the above B4 ali posted. basically, ditto her.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 28, 2007 at 7:43 am
No, they are CERTAIN of her dx. We have had many neuro docs look at her and there is no doubt about the dx. The movement she is doing is slight, with very little muscle control, but it’s there.
They did some blood work and the results of this bloodwork is the cause of doing another round of IVIG. They said it’s to prevent her from backsliding, not because she already is.
She is not nearly as excited as we are to see even a slight finger twitch! 🙂 We try to explain that this is a great accomplishment and she gives a half smile and a look like; eh, no big deal!
I’m going to go in there now, so if I found out more, I’ll let everyone here know via post so everyone can help me decipher what’s going on!!!
Thanks for everything!!!!
AnonymousMarch 28, 2007 at 8:56 am
[FONT=Arial]Im sure you have seen this, but its just a refresher.[/FONT]
[FONT=Arial]Portion of an article from the “Communicator” called “Whats in a Name”[/FONT]
[FONT=Arial][QUOTE][FONT=Arial]The most important reasons for distinguishing between GBS, [COLOR=black]SIDP[/COLOR] and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. [B]As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE.[/B] However, most do not. Therefore, [B]repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated[/B].
[/FONT][FONT=Arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time.[B] Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).[/B] [/SIZE][/FONT][/QUOTE][/FONT][FONT=Arial][SIZE=2]
AnonymousMarch 28, 2007 at 9:55 am
G-there is no test for gbs, how can they be certain of their dx? has your mom had a lp? and a ncv/emg? those tests will tell the drs if she might have gbs, and if the ncv shows demylination, it can show a few things, one being damaged nerves and the other demy of nerves. after your mom regains movement then they can do another ncv/emg to determine if there is axonal involvement. it takes time, as with recovery, to determine which type, how much damage, and how much remy is done to the nerves, and then the for sure dx can be made of either gbs, axonal gbs, remitting/relapsing gbs, or cidp. just remember there is no for sure thing with this stuff, no matter what a few drs say, there is no for sure things. it is very encouraging that your mom is starting to regain movement, even though it may be small, its still an improvment. just keep up the positive atmosphere around your mom, don’t make too big of a deal, it can go the other way in no time. another thing to remember to do with your mom, keep her updated on current events-outside of the hospital. she needs the connections, it helps to keep her from getting to absorbed in the now of her health, broaden her horizons abit, make her feel like she is still involved in the outside world. please give her a Big Hug for me, and give my best to your dad, he is doing great. don’t be afraid to ask the dr about all your concerns. take care.
AnonymousMarch 28, 2007 at 3:39 pm
I realize that there is no test for this, but based off of MANY doctors, not just a few, her EMG tests (note: plural), her symptoms, and the many, many tests they have run, they have all unanimously agreed that she has Axinol GBS. It was only after they have moved her to the 2nd acute care facility that we were told the acute/chronic status. Only one person has mentioned CIPD, but everything I have read about this form is not the way it occured in her. It was not a slow process. It was most literally overnight.
Unfortunately, I didn’t get much more information today than I had yesterday. Her potassium dipped on her labs so they started her with an IV drip to bring those levels back up. She still has a “mass” of fluid in her left lung that they are doing percussion treatment on 2x daily.
She seems to have tolerated the 2nd round of IVIG well. No side effects like those I was reading about in another thread.
I understand that none of these different variations fall into an obsolute category, but I have yet to read of someone who is Axinol GBS who is also CIPD and chronic. But, I still have much, much, MUCH to learn. Which is why I’ve called upon all of you to help me out!!! 😀
Thanks for listening!!!!
AnonymousMarch 28, 2007 at 6:57 pm
The inflammation, which usually involves loss of the nerve’s myelin sheath (demyelination), slows the conduction of impulses through the nerve, and damages portions of the nerve cell, resulting in muscle weakness, paralysis or sensory disturbances.
The damage may also involve destruction of the axon part of the nerve and/or nerve cell (denervation), which blocks conduction through the nerve.
Spring 2007 Newsletter [I]The Communicator[/I] Article: GBS, CIDP, or What? And Does It Matter? By Richard Hughs, Professor of Neurology, Guy’s Hospital, King’s College London, UK
GBS is defined and separated from CIDP by the time people take to reach their worst. By an arbitrary definition, patients who reach their worse within four weeks are said to have GBS. Patients who reach their worst in more than eight weeks are diagnosed as having CIDP. In between are a small group of patients who reach their worst between four and eight weeks and are said to have subacute inflammatory polyneuropathy (SIDP)….
Personally, when you read about GBS or CIDP, it depends where you go and who wrote the article as to what information you will find. I don’t think there is a doctor in this world that can tell you at this time how well your mother will recover from what appears to be GBS, because of her improvement…even though slow, but still improvement! And, to me, this shows that she is in a recovery stage…already through her worst.
Warmest regards to your mother and you.
AnonymousMarch 28, 2007 at 8:38 pm
I am totally unqualified other then personal experience. However it would seem that she is near he nadir and has CIDP. There are many who have had a rapid onset but have CIDP. I wish I could tell you for sure which, it is only my opinion but I will say a prayer for you all. I hope you keep coming back to the forum, take care.
AnonymousMarch 30, 2007 at 8:57 am
They had her strapped to a table yesterday that enabled to her to upright for the 1st time in 6 weeks!! She was so excited, but it caused pain in her feet just being upright. She was being fully 100% supported with a harness, so there was no chance she would injure herself. It was quite a day!!!!
She also drank cranberry juice from a straw, even with the vent! She continues to get stronger every day and there seems to be something new she can do every day! Even little minor things. It’s so great!!!
I just wanted to post some good news about her for a change, and not always feel so down about her state. Her mood was good yesterday too, I think she’s starting to see her own progress happening!
I’ll be in touch with more info and I’m sure more questions!
Thanks for listening!
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