This is now day 18 of my GBS. I did have my immunoglobulin treatment over 5 days and the disease stopped spreading and I dare say I have improved a bit. I am still week in my hands and arms and feet and legs.
I asked the doctor if I will eventually need a top up of the immunoglobulin and he explained that this will depend on my symptoms. So does that mean we wait and see if I get worse again until we do something ? How did everyone else on here get their treatment, was it a once off for 5 days and that was it ? The doctor explained it is not a timed treatment where after a certain period of time I would receive a top up.
My understanding of GBS is first it gets worse then it plateaus and then slowly it gets better. Can it be that after getting better that it gets worse again ? So many questions I know, but the doctors don't always seem to have the answers.
I have recurring GBS. My first round of IVIG lasted four months before the symptoms returned. I get the infusion every 3-4 weeks, depending on my symptoms. I set my own schedule, so to speak. Now, it’s almost four years. I cannot take prednisolone because it exacerbates my symptoms, so the do not diagnose me as CIDP.
…with CIDP. I seem to need an IVIG “booster” every 3-4 months. Gabapentin seemed to help a little at first, but I am weaning off it now. While the symptoms reoccur, I can recognize them better, and I’m able to go longer between boosters each time. All that said, my trend is positive, just slow and steady. I’m able to function more normally all the time.
I had five days of IVIG and then they kept me in neuro for a few more days to make sure that I kept improving before moving me to rehabilitation. If you do, then you’re likely just going to keep getting better. They just have to wait to make sure that your immune system has stopped attacking and is functioning normally. For most, five days of IVIG does the trick, but some people need another round or a different treatment. Assuming you have GBS and not CIDP, it sounds like you’re on the mend. Good luck with the rest of your recovery!
My experience is similar to Kimberly's, and is, I think, fairly typical. My question to you is, who posted your question? You, or did you dictate it to someone? If you posted it yourself, then you are doing very well. It was probably about 8 weeks before I had the strength/coordination to do something like type on a keyboard. So hang in there, it sounds like you are on the mend already.
I'm still pretty new to this GBS too, was diagnosed and treated in July; 5 days of IVIG and waiting to see what's next. This is a syndrome rather than a disease, I think waiting and watching is the MO. I'm back to work, pretty steady on my feet, able to do most things that most people do. Have recently developed hand tremors, which makes it very challenging for me to do what I usually do. My arms and hands are very slow to regain strength. Curious about follow-up IVIG. Will look forward to how this post evolves, and best wishes to everyone for continued health and happiness!
I was given a 5 day dose of immunoglobulin twice, once as soon as I was diagnosed and placed into ICU and a second time three weeks later when I was in rehab. It worked brilliantly the first time but then I started to have my symptoms reappear so they gave me a second 5 day course. That was almost a year ago now and I haven't needed any more. I still have some problems with my feet, hands and face but it has been stable for about 9 months now inching forward. No one can tell you if/when you will be better - it is so individualistic its crazy. But be comforted in you are not alone in this, there are more people out there going through it than I imagined and I have found this forum to be the best support. Take Care
My experience is similar to Kimberly's, and is, I think, fairly typical. My question to you is, who posted your question? You, or did you dictate it to someone? If you posted it yourself, then you are doing very well. It was probably about 8 weeks before I had the strength/coordination to do something like type on a keyboard. So hang in there, it sounds like you are on the mend already.
I am 4 weeks post diagnosis… Had my lower EMGS yesterday my symptoms of pain , burning ,throbbing numbness is worse. Had the 5 day regiment of Ivgi did ask due to worsening symptoms did I need 5 more he said right now we will treat the symptoms with a increase in Gabapentin no pain meds ECT.
To call him Friday if it helped then would make decision,pain med possible Fentyl patch, and IVIG again.
Not sure if I would be put back in hospital I received 35 grams my infusion time was quite long at about 10hours. How long was yours???
All the best I hope your recovery is quick.
My infusion times were rather long as well, usually around 7 hours on average. It all came down to the staff applying the infusion and at what speed they would run the infusion. I was put on 45 g (I am a big fellow :-) ) which came in 6 bottles. So every time they had to change the bottle they also had to check the badge number, and if it was a new badge number they had to reduce the speed of the infusion and then slowly build it up, to ensure I don't have any reaction to the product.
Another thing that kept on happening is that the infusion would stop and the machine would start beeping, this was mainly due to bubbles or me moving around too much. It is a bit hard to be still for 7 hours.
I wish you a successful and quick recovery.
Best wishes from Australia mate...
Dawn Posner said:
I am 4 weeks post diagnosis... Had my lower EMGS yesterday my symptoms of pain , burning ,throbbing numbness is worse. Had the 5 day regiment of Ivgi did ask due to worsening symptoms did I need 5 more he said right now we will treat the symptoms with a increase in Gabapentin no pain meds ECT. To call him Friday if it helped then would make decision,pain med possible Fentyl patch, and IVIG again. Not sure if I would be put back in hospital I received 35 grams my infusion time was quite long at about 10hours. How long was yours??? All the best I hope your recovery is quick.
Beau… Thank you for your reply. So very kind of you…
This whole thing is very frustrating. Yes I also had the alarms of infusion pump going off all the time plus two nurses that must not of read the orders. Second night I knew I
Was to get 3 bottles the small one was first when done I said " what about the other two"
Her answer " oh no that’s it last night was a loading dose" OK… Being a ex operating nurse knew this was not right. I waited 7.5 hours to talk to the charge nurse he found it started it was to quick this is were some reaction was noticed. The burning and severe pain with nothing
Till at least Friday is terrible. My hope is that your feeling stronger soon…
Do you know when you will be released yet. Wishing only that the pain and numbness that is worse was treated as quickly as possible…
I hope your pain will fade away soon and that the doctors will be able to give you appropriate medication for the pain. not sure when I get to go home, but it will be another few weeks for sure. To be honest Dawn, I am not keen on going home right now. I live alone in a double story house and there are stairs without rail (there are walls on either side though). At the moment I feel weak and vulnerable and here in hospital I feel safe and don't have to deal with the challenges that the outside world will be throwing at me. They cook my meals and make my bed.
Wishing you a speedy recovery mate
Beau
Dawn Posner said:
Beau.... Thank you for you reply. So very kind of you... This whole thing is very frustrating. The burning and severe pain with nothing Till at least Friday is terrible. My hope is that your feeling stronger soon... Do you know when you will be released yet. Wishing only that the pain and numbness that is worse was treated as quickly as possible...