I was diagnosed with GBS on 3/1/2013, had an incredibly rapid decline (3 days) and an incredibly fast recovery as well...By the 3rd IVIG treatment, I was able to stand with a walker with assitance, by the 5th IVIG treatment I was able to walk 100 ft with a walker. I went to acute rehab after the 5th IVIG and within 2 days there I was walking without an assistive device and I was able to go up/down stairs, which meant I could go home.
My fatigue levels continue to prevent me from being able to work (as a physical therapist) or even travel by myself more than 20 minutes from home. I can tolerate about 1.5-2 hours of continuous activity before I need to sleep, but I can sit on the couch all day with only 1 nap required.
I had an EMG and NCS this week which were basically normal except for one nerve showing increased latency around the right ankle.
Here's where things get strange...my symptoms change daily. Some days I have no strength in my left quadricep. 2 days ago, I developed foot drop on the right, which resolved last night. I get numbness in my feet and hands which changes by the hour. I didn't think GBS worked this way. Can anyone else relate?????
Sounds pretty normal really... I mean normal for having a very very rare affliction. I was in the ICU for seven days and was slow walking when I made it out of the hospital. I was out of work for six weeks and when I did return I was not putting a full day in. My Dr recommended a six month leave of absence and in hindsight I should have taken more time off and listened to him. I felt bad about being "so lazy", but really not much you can do about it.
I am in my ninth month of recovery and still have periods of exhaustion and fatigue. When I get too tired I have find it harder to fully swallow (a minor thing, but annoying). I have my reflexs back and can run a short sprint. It gets better.
There is the chance of recurrence so don't take anything lightly, but I believe it's normal to have pain, numbness, or different areas experience sensation etc while the nerves are repairing. The exhaustion is part of GBS, don't know why but I am sure many can relate.
Darlick- thanks for your response. As it turns out, I wound up back in the hospital 3 days ago. I had a rapid onset of muscle weakness again…so, here I am. The doctors are now looking to rule out/in porphyrea (a genetic disorder that causes a presentation similar to GBS). So, we wait and see…
I can’t relate to the quick comeback because it has been 18 months since I was stricken and still have no feeling through out my hole body and can only walk about 20 feet with a walker. I understand the fatigue and how things change daily. It’s a new challenge every day. Hang in there, I sure am trying.
I just had my first anniversary with GBS and I've improved a lot but have a long way to go. I have nuropathy in my arms legs and hands. My hands feel like they are covered in butter and like I'm wearing very tight plastic gloves. All and all I feel blessed as I know others with bigger problems than myself.
I haven't had complete loss of any limbs but I have had weakness mostly in my right side but now developing it on left too. I spent 1 week in hosp and had 3 days of ivig . I went home and had phy therapy for a few weeks then went to University of Virginia for a complete look over. At 1st I was dx with GBS on may 10,2013.
after 3 EMG S they dx me with CIDP which to me sounds like that. I will talk with you more later because my son is giving me the stink eye to watch a movie
I haven't had complete loss of any limbs but I have had weakness mostly in my right side but now developing it on left too. I spent 1 week in hosp and had 3 days of ivig . I went home and had phy therapy for a few weeks then went to University of Virginia for a complete look over. At 1st I was dx with GBS on may 10,2013.
after 3 EMG S they dx me with CIDP which to me sounds like that. I will talk with you more later because my son is giving me the stink eye to watch a movie
After initial IVIG 5 treatments and 6 wks rehab graduated from walker to cane, pronounced neuropathy in foot,ankle,one leg to hip,all of a sudden dev weakness and neuropathy in good foot and leg, creeping up leg and hands, Neuro thinks we may be chronic so ordered another IVIG dosage, 2 days after I’m walking without cane, have balance and strength, weirdnut I’ll take it, hope to go 6 wks or so without a setback and it doesn’t confirm CIDP, how long do you wait to determinfe backslide or just a normal ebb and flow of discomforht?still have numbness and muscle cramps ,anybody kick it after 2nd or 3rd IV go round? Don’t like the sound of CIDP
Opatom- YES! Shortly after I wrote this initial post, I was admitted back to the hospital with ascending paralysis (again). Had a second round of IVIG and came out better than before I went in. It is now just past 6 months from my initial bout and I an finally back to work. On a good day, I’m 98% of what I was b4 dx, on a"bad day" I’m at 90%…i am truly blessed! Hang in there!
I can relate to your story very much, I could stand with assistance after my 3rd round of IVIG and could walk after the 5th dose about 100ft too! I was in a rehabilitation center for 5 days, I was able to walk without a walker on the third day! it is crazy how so many people have so many different stories but it is cool to find one like your own! I know you posted this a while ago but I am new here and was looking around reading everything :)