October 28, 2017 at 10:38 am #113449JcheartParticipant
I’m curious why they say recovery takes so long from GBS? If GBS supposedly peaks at 8 weeks, then what is the process after that? Is it that demyelination is taking place up to 8 weeks, and then after that the nerves start to heal and recover?
I’ve read on here that people continue to have weakness (which is what I’m still experiencing at 4 months out from onset), but does that mean I would still have nerve damage that would show on an EMG, or would the nerves be healed at this point?
I’m just trying to figure out why they say it can take 6 months up to 3 years for full recovery? and why? If demyelination has ceased, what is causing the delay in recovery then?
If anyone has any input on the process of how GBS is affecting the body, say, during onset, then what’s happening to the body after peak and during recovery? would greatly appreciate any input. Thank you!
October 28, 2017 at 11:58 am #113450
One of the main reasons is that GBS is not a single condition. Numerous studies have reported something such as this: ” Little is known about the long term prognosis for patients the (sic) severe acute motor axonal neuropathy (AMAN) form of Guillain–Barré syndrome (GBS), unlike those with acute inflammatory demyelinating neuropathy (AIDP).”
There may be only demylenation, linked to AIDP, or there may be axonal damage which runs the length of the nerve, as in AMAN.
Further, there are other factors linked to words associated with specialists and Journals of Neurology. Such as: association with anti-ganglioside antibodies, Campylobacter jejuni infection, axonal degeneration, Wallerian-like degeneration in the ventral roots and damage to Nodes of Ranier. Also, preceding gastroenteritis or collateral sprouting of surviving axons.
Finally consider this: “In our study, 8% of the 97 patients with GBS (six AMAN and two AIDP) could not walk independently at six months after onset. In the AMAN group, four of the six could walk independently one year after onset, one could walk independently 28 months after onset, and the remaining patient could walk 57 months after onset. Generally, it is believed that no further recovery can be expected two to three years after GBS”
the study is here- http://jnnp.bmj.com/content/76/5/719
There are other studies. Do a web search such as I did- guillain barre syndrome recovery patterns.
November 2, 2017 at 1:23 am #113468xochitlcortesParticipant
Good evening “Mr or Mss JK” you looks like you are very knowledgeable referring GBS, i will like to talk to you about my case and see if you have any input in my case. This Nov 8 2017 its going to be a yer that GBS get me after a stomach flue when i was 58 years,(i have no high blood pressure, no diabetes, no health issues except GBS, but 59 years old) my recuperation its been very slowly i wondering if its because my age. I recovery about 40% of my hands and arms movement but my hands trembles so much to the point I throw my food out of the fork and Im still in wheelchair, my ankles can not hold my body weight, one year in recuperation and counting. I just got authorised to get five consecutive IVG infusions and one every month, last week I got two and this week two more I had four until today Nov 1 2017 and I dont feel any improvement, to the contrary i feel tire and sleepy.Do you know anything more I can do to improve faster or should i get in the idea of I PLATO.
Appreciate your attention to this matter
November 2, 2017 at 1:52 am #113469GHParticipant
It depends on the particulars of the nerve damage. Demyelination heals relatively quickly and completely. Axonal damage takes much longer to heal and may never be complete. Scarring can leave permanent damage. That’s just the way it is.
November 2, 2017 at 2:08 pm #113470xochitlcortesParticipant
Appreciate your reply “GH”
November 2, 2017 at 7:01 pm #113472cer100Participant
How is it determined if axonal damage has occurred?
November 2, 2017 at 9:37 pm #113473
Hello xochi. Older age is a factor in recovery from GBS. Yet, as GH as alluded to, it depends on the particulars of your case. Factors such as initial diagnosis, time to peak severity and how soon treatment was initiated all play a role in recovery.
Regretfully, a small percentage of cases do not experience rapid or complete recovery. I do not understand the IVIG treatment. Did you have IVIG initially? Why, if you are receiving 5 consecutive treatments are they being given over 2 two days, two weeks apart?
Your recovery and prognosis is a topic you and your doctor should discuss. Perhaps you would benefit from a 2nd opinion. Talk with your doctor.
I do not know what I PLATO means.
November 2, 2017 at 9:56 pm #113474
cer100: “Axon loss: Amplitude of compound muscle action potential (CMAP) correlates with the number of motor nerve axons, and similarly, the amplitude of the sensory nerve action potential (SNAP) reflects the number of sensory nerve axons. Lesions causing axon loss generally result in reduced CMAP and SNAP amplitudes.”
CMAP and SNAP are diagnostic components of EMG/NCV testing.
November 2, 2017 at 11:54 pm #113475GHParticipant
cer100, jk has it. My neurologist used an EMG test to conclude that I have axonal damage in my legs.
November 10, 2017 at 12:42 pm #113519JcheartParticipant
Thanks so much for everyone’s input and reply’s.
I guess it only makes sense, when dealing with GBS or CIDP, that weakness will persist until the nerves are healed, if and when they do (hopefully).
Another EMG this coming Monday – still looking for answers and a diagnosis. But it’s hard to get any kind of treatment when they still can’t figure out what’s wrong with me. At this point, I feel like I’d be willing to try anything to just get my strength back.
July 2, 2019 at 12:44 am #116425sophia edwardParticipant
Jk I really like your comment, I really get my ans through your comment.
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