I was diagnosed with gbs 6 weeks ago and after 5weeks I managed to get the pain under control although I still have complete numbness of both feet and terrible stiffness in my hands/fingers.my other worry now is that last night for the first time I woke up struggling to breath and I want to know if this is common with gbs sufferers and is it common for further symptoms to arise after treatment?
If you are starting to have trouble breathing be very careful. You need to go to the hospital if it gets much worse. What kind of treatment did you recieve? Also from what I have read yes some people dont respond great on their first treatments and need more.
Thanks for the reply tngbs the breathing thing seems to come and go so hopefully not related and just anxiety over the condition. My first treatment was ivig and after my first outpatients appointment last week my Dr did suggest a further course may be required you’re right, I just want to return to some sort of normality as it often feels like nobody understands how difficult gbs actually is.
That’s because to most people you look healthy. So they don’t see what the big deal is. If they only knew!
During my treatment and hospital stay,my breathing was definitely affected, but it never seemed to be too much trouble. It's definitely something to keep an eye on. When I was in the hospital, they had this little device that I would blow into every day as both a way to track and strengthen my breathing. It seemed like a pretty cheap little plastic thing, maybe your doctor could get you one of those if you aren't staying in the hospital?
Otherwise, the episodes of loss of breath in my specific experience does happen. Even now 4 years later, I will have an episode every now and then. Never anything serious, and I don't have any ill effects afterwards, but it does happen from time to time.
As for symptoms after treatment, yes it can happen. Especially in cases that are caught early. Since there is no real cure, the treatment may not completely stop the progress of the syndrome. It happened with me as well, where about 4 weeks after treatment I hit the worse point with the syndrome. Definitely be careful to track anything else going on and get to the doctor if necessary. After those 4 weeks after treatment, it got to my stomach and shut down my digestive track which sent me right back into the hospital from my rehab center.
Did you ever have pain in your chest? I have been having racing heart issues with pain in my chest sometimes with an episode of difficulty breathing in. It's like there's a resistance there that makes it difficult to get a deep breath in. It's worse if I am lying on my left side for some reason. Sometimes it comes with an achy pain in my chest that goes through my shoulder blades. But it doesn't last and the breathing thing has only happened a couple of times for me and it's been when the abdominal and heart thing seemed to be flaring at its worse. The heart racing is getting better too. Just waking up the last few nights with this aching in my chest. I have had my heart checked and it is great. I'm seeing a specialist in June which can't come soon enough!
I have had a dull ache when it’s happened but as with you its only occasionally and since originally posting it does seem to of calmed down and I’ve put it down partially to the stress of moving home. I am still suffering with foot numbness and hand trouble which is showing no signs of improvement and I’m thoroughly fed up of being reliant on the help of others to do things.