I had my lumbar puncture finally after waiting 4 weeks, begging Doc to put me in the hospital fearing I'd be paralized if the progression continued (which didn't happen thank God). My CSF proteins came back at 175 the next day. A week later, I'm getting IVIg started - tomorrow - and have so many questions, I don't even know where to start.
Do GBS sufferers commonly have acute muscle wasting? I just saw my body shrinking over the first three weeks, and so the 4th week I started measuring the girth of my legs. Every 2 days, they shrunk from 1/4 - 3/4 inch, and now over a week later it has slowed down.
Id like to hear your stories.
Do GBS sufferers commonly have a "MS hug" ? Which is tight belt - like feeling around your ribs? Mine is very tight and hasnt let up since the first week.
Do GBS sufferers commonly get bradycardia (under 50 BPM HR) and heart arythmyas when they lay down? Or tachycardia (over 100 BPM HR) too with normal walking and activity? My doc isnt concerned at all about my heart, but on the ECHO it did have a few complications - on my Holter monitor (24 hour) 2 % of the beats were PVCs or irregular beats. It concerns me when I feel this happening in my chest. What do you think?
I have the most weakness on my right side, those leg muscles, especially the calf, have shrunk to half the size of my right. I also have an irregular heartbeat. That part was pre-GBS though.
Last year in May I came down with GBS. I was paralyzed from my neck down.
When I was in the hospital and skilled nursing, my muscles surely did shrink. My calve muscle would just hang like flab, no tone to the muscle. Same with my thighs and arms. But you gain it back slowly once you start working it during PT.
As for the tightness around the chest, yup I had those too. Felt like a belt around my chest. But it eventually goes away. In fact, it went away so sudden I didn't realize it was gone.
Hang in there. It's going to get better. Just keep on working to get better.
Aloha -
That's very encouraging. Thank you.
Yes!! my heart flutters and PVC/irregular beats started about 5 + months ago. I'm wondering if its about when the hospital health dept goes around with flu shots on a cart for us. Well, I'm not participating in that any longer... sucks that now I'll have to always wear a mask to visit with the kids, and I'm the Child Life Specialist who isn't supposed to look like a Dr!! Thanks for sharing. It helps to know there even IS a "Pre-GBS". I didn't know that, but thought I had tons of Pre-GBS signs, even up to 5 or 10 years worth of chronic fatigue, right intercostal rib muscle problems, swallowing issues that never go away, etc, etc.
Wenders71 said:
I have the most weakness on my right side, those leg muscles, especially the calf, have shrunk to half the size of my right. I also have an irregular heartbeat. That part was pre-GBS though.
Wow, Spencer, these are things I just couldnt find anywhere online when reading tons and tons of symptoms and descriptions of GBS!! Atrophy isnt discussed much. I'm so glad to hear, because I keep thinking maybe it's not GBS. I think I have the Acute Ideopathic Panautonomic (more rare) type but this only comes from me reading, not a doctor telling me. Were you hospitalized, Spencer?
Spencer said:
Last year in May I came down with GBS. I was paralyzed from my neck down.
When I was in the hospital and skilled nursing, my muscles surely did shrink. My calve muscle would just hang like flab, no tone to the muscle. Same with my thighs and arms. But you gain it back slowly once you start working it during PT.
As for the tightness around the chest, yup I had those too. Felt like a belt around my chest. But it eventually goes away. In fact, it went away so sudden I didn't realize it was gone.
Hang in there. It's going to get better. Just keep on working to get better.
Aloha -
Yes Kathy I was. I was in a hospital for a month (12 days in ICU and 9 days intubated). I then went to skilled nursing for another month because I wasn't able to move yet and couldn't get admitted to a rehab hospital. Then I spent 3 weeks at the Rehab Hospital of the Pacific. When I was discharged from Rehab, I was able to walk with assistance of a walker. Today I'm back at work. I still have some residual effects like numbness under my feet and my left leg is a little weak, and my core muscle is still a little weak. My left shoulder hurts but I'm not sure if it's GBS related. Probably is.
Kathy Cooper said:
Wow, Spencer, these are things I just couldnt find anywhere online when reading tons and tons of symptoms and descriptions of GBS!! Atrophy isnt discussed much. I'm so glad to hear, because I keep thinking maybe it's not GBS. I think I have the Acute Ideopathic Panautonomic (more rare) type but this only comes from me reading, not a doctor telling me. Were you hospitalized, Spencer?
Spencer said:
Last year in May I came down with GBS. I was paralyzed from my neck down.
When I was in the hospital and skilled nursing, my muscles surely did shrink. My calve muscle would just hang like flab, no tone to the muscle. Same with my thighs and arms. But you gain it back slowly once you start working it during PT.
As for the tightness around the chest, yup I had those too. Felt like a belt around my chest. But it eventually goes away. In fact, it went away so sudden I didn't realize it was gone.
Hang in there. It's going to get better. Just keep on working to get better.
Aloha -
Thanks, Spencer. I hope you were able to gain most of your strength back, your pain is gone, and you have regained all of the use of your extremeties. I just finished the first round of IVIg, and I actually feel worse or at least, not better in the way of pain relief. I'm so numb all over. My nerves are so hot in my elbows, upper back, and my elbows to hands & calves to feet are like burning hot lava whenever I try to rest (lay flat) or at bedtime all night long - not to mention such sore muscles in forearms, fingers, hands, feet & calves. Some nights I can't sleep at all, and I'm lucky to get 2 or 4 hours on other nights. Is it possible for this pain to start to go away soon? It's only been one day since my 5th IVIG treatment.
Chatty Kathy
Last year in May I came down with GBS. I was paralyzed from my neck down.
When I was in the hospital and skilled nursing, my muscles surely did shrink. My calve muscle would just hang like flab, no tone to the muscle. Same with my thighs and arms. But you gain it back slowly once you start working it during PT.
As for the tightness around the chest, yup I had those too. Felt like a belt around my chest. But it eventually goes away. In fact, it went away so sudden I didn't realize it was gone.
Hang in there. It's going to get better. Just keep on working to get better.
Aloha -
Thanks, Wenders711
I hope you were able to gain most of your strength back, your pain is gone, and you have regained all of the use of your extremeties. I just finished the first round of IVIg, and I actually feel worse or at least, not better in the way of pain relief. I'm so numb all over. My nerves are so hot in my elbows, upper back, and my elbows to hands & calves to feet are like burning hot lava whenever I try to rest (lay flat) or at bedtime all night long - not to mention such sore muscles in forearms, fingers, hands, feet & calves. Some nights I can't sleep at all, and I'm lucky to get 2 or 4 hours on other nights. Is it possible for this pain to start to go away soon? It's only been one day since my 5th IVIG treatment.
Also, can you explain the "Pre-GBS" ?? my heart flutters seem to have stopped too. I get a liver Ultrasound in 2 days because in the pre-GBS and early onset of my GBS, it showed high ALT & AST liver enzymes... my guess is that the liver got a virus, which caused my headaches, and since then, the enzymes have been decreasing and they might not see anything,... except results from me taking pain killers... Tramadol.
Thx much, Chatty Kat
Chatty Kathy
Kathy Cooper said:
Yes!! my heart flutters and PVC/irregular beats started about 5 + months ago. I'm wondering if its about when the hospital health dept goes around with flu shots on a cart for us. Well, I'm not participating in that any longer... sucks that now I'll have to always wear a mask to visit with the kids, and I'm the Child Life Specialist who isn't supposed to look like a Dr!! Thanks for sharing. It helps to know there even IS a "Pre-GBS". I didn't know that, but thought I had tons of Pre-GBS signs, even up to 5 or 10 years worth of chronic fatigue, right intercostal rib muscle problems, swallowing issues that never go away, etc, etc.
Wenders71 said:
I have the most weakness on my right side, those leg muscles, especially the calf, have shrunk to half the size of my right. I also have an irregular heartbeat. That part was pre-GBS though.