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Living with Polyneuropathy CIDP, GBS, & CMT

After effects question


#1

So my husband was diagnosed with GBS January of last year. I did a ton of research on it. But never looked into the after effects. He had full body gbs, was paralyzed (just now learning to walk again) and on a ventilator from January 2016 til March 2016. He’s been experiencing pretty strong jerking and twitching. Like it will throw him out of the wheelchair or off of the bed During the worst twitches. But this happens when he’s at rest. So it’s like his brain and body aren’t in sync. When his body is supposed to be resting, its going crazy. So during the day, he’s exhausted. We just don’t know. And I want to help him. He’s so frustrated.


#2

Anna, I had GBS although mild compared to your husband. I Had it my legs and could not walk, but they cought it before it entered my diafram and only had slight breathing problems. I have twitching when yawning and when I wake up and stretch. I also had to get out of bed as my body just could not lay there anymore. I assumed it was from constant stimualation of my nerves being stimulated from the bed and covers. So every night I am up from about 2Am-5AM. I am assuming the nerves are a little over stimulated and go a little haywire after having such a long rest or constant stimulation from the bed and covers. Since your husband had GBS much worse than I it makes sense that his twitching would be much worse.
There was a lady on my hospital floor that had your husbands symptoms. I talked with her and her husband and they were medicating her to control the twitching. There is a fine balance between drugged up to much and loopy and just enough to stop twitching. I saw and talked to her in both states.
Talk with your neurologist about the this issue.


#3

I had a similar experience but was only on a respirator for about 8 weeks. I was diagnosed in June 2015 so my recovery is well along. I was able to walk with a cane by December, about 7 months after diagnosis. I still have involuntary muscle twitches, primarily in my left leg and foot where I still have no feeling and limited voluntary movement, but it can also be on my right leg. I also have hand tremors at times, particularly when I’m tired. The twitching will vary from very minor to bad enough that my wife thought we were having an earthquake one night. It almost always happens when I’m at rest, usually at bedtime but sometimes when I’m sitting in my recliner. I find it’s worse when I forget to take a dose of my gabapentin. It’s irritating and frustrating but you can learn to live with it and hopefully it will improve with time. Definitely consult with the neurologist.


#4

I will be tomorrow. Thank you. I just didn’t know if it was common or if something is misfiring. If it’s it’s permanent… IDK. It’s scary.


#5

Good luck with your appointment today Anna, let us know how it goes.

CG


#6

Oh my! I had the acute form of GBS back in 2009 but nothing as severe as what you describe your hubby is having to deal with post GBS. Where is your hubby these days? Is he at home and receiving specialized home Rehab services? Is he in a Skilled Nursing Facility that can provide him with round the clock assistance and rehab services? Just where is he now?

First off, call/see his Neuro ASAP. Have him/her share his/her experience in caring for patients that have or have had GBS with significant after effects like what you describe your husband is experiencing.

2nd, Ask the Neuro for a rec to an expert that sees severely impacted patients who happen to have had GBS- preferably one that sees patients in either a specialized hospital type level setting or one that can admit/see patients at Tertiary hospital facilities (Tertiary as in where Trauma patients are taken to for intensive medical care in your area/community).

Your message didn’t say what sort of hospital (community based or one where trauma patients are seen- there is a Very Big difference between the 2) setting your hubby ended up in in 2016. If there’s a University near where you live, have the MD (the Neuro or even his Primary care MD) ID where patients are sent or admitted for truly specialized treatment and Acute and/or intensive Rehab level services. These facilities have the necessary staff more readily available in their respective fields who see patients requiring highly specific specialized services.

Don’t get me wrong. There’s nothing wrong with a local community hospital in a life or death scenario.
A Tertiary hospital is one that has a range of specific specialty Inpt and Outpt services available. Sounds like your hubby was severely impacted by the GBS he had. There could also well be something else entirely going on in addition to being post GBS as well- all the more reason to have him seen by MD’s in a Tertiary setting where it is far easier to obtain highly specialized Inpatient and Outpatient services.

I am no medical expert but if your hubby is “jerking and twitching” so badly that he ends up being lifted up out of his wheelchair or off a bed and because you think it’s as if his brain and body aren’t working in sync properly, chances are that may well be the case. Seizures can do the same thing and look very similar… Either way, it sounds like he is very much in need of specialized Neuro care and support services on either an Inpatient or Outpatient level. This could well involve further specialty testing needed to determine what is happening to him that may not be as readily available in the area nearest to where you live.

So sorry to hear how impacted he currently seems to be. That has got to be quite scary to have to contend with. Another plus with a Tertiary facility could well be the support services available to family caring for someone that is significantly impacted to the degree that your hubby seems to be. You need help too in this matter and that might be more readily available via specialized services/clinics available at a Tertiary setting.