Hello everyone! i had got gbs in aug of 2013! i started to feel like i was getting better even know that my feet and hands were going numb! i was able to lift some weight,walk with out severe pain and now it seems as if i am getting worse with it all! having hard time eating ,everything going numb.tingling.burning and so much pain! i have taken test after test!! everything normal they say! but know i have diarrhea that has been going on for quite sometime!! has anyone expierenced this and can you tell me how to cope with it! cause i have been going through therapy and seem to be getting worse! i feel like im in a swamp and cant get out!
When did you start feeling the decline again? Have you been under intensified physical or mental stress?
I was feeling much better after my initial GBS, lifting light weights, PT three times a week, driving, traveling, working. It was hard, but I was doing it. And then, after a trip with my family, I came back and started declining quickly. Within two weeks I was falling again, numb and legs felt so heavy, and eventually couldn't stand or walk on my own anymore. Back to the hospital I went. I was told it was not a relapse, but an acute exacerbation due to the physical stress of my trip and the severe mental and emotional stress from work after my return. I'm back in acute rehab center now, still needing a walker to move around and working hard in therapy. It's been so frustrating to feel like I went back to square one...
Do you feel like it's coming back as bad as it was the first time around?
Hi Stephanie I understand how your feeling, ive had the numbness, tingling and a lot of pain, along with the tests coming up clear. You know your body and the problems that are happening. You have to keep a strong mind, you cant let it take over you. Whenever I want to do something or go somewhere I put the pain to the back of my mind, and deal with it later. Ita not easy,and you must fight dont be afraid to be heard. I have taken on drs and consultants and insisted to be heard. I hope ive helped if only in a small way
Hi
Iwent through a recovery had on and off problems then a flare up. I have had many discussions with consultants who were adamant it cant come back. But I spoke to someone at the gbs assoc in the uk who said that it was untrue. I cant walk without a walker and even then I drag my feet and a lot of times I have to stop as I cannot physically walk any further. I guess I wont let the drs beat me, and I have kept a strong determined mind.
BrokenBear said:
When did you start feeling the decline again? Have you been under intensified physical or mental stress?
I was feeling much better after my initial GBS, lifting light weights, PT three times a week, driving, traveling, working. It was hard, but I was doing it. And then, after a trip with my family, I came back and started declining quickly. Within two weeks I was falling again, numb and legs felt so heavy, and eventually couldn't stand or walk on my own anymore. Back to the hospital I went. I was told it was not a relapse, but an acute exacerbation due to the physical stress of my trip and the severe mental and emotional stress from work after my return. I'm back in acute rehab center now, still needing a walker to move around and working hard in therapy. It's been so frustrating to feel like I went back to square one...
Do you feel like it's coming back as bad as it was the first time around?
Hang tough, Stephanie! For me anyway, intense PT caused a relapse. I had to learn when to back off, and have made steady (slow!) progress since. Challenge your Dr.'s and therapists. They need your input, and they work for you. Stay strong, you can beat it!
i have been having seizure like symptoms also which they told me was syncope! it says that 20% of people with gbs get it it! very scary feeling when i was driving getting them!! but my legs are tarting to go numb and feet are burning also same with h hands!have lts of stress ! i do go to best have every test done! they had diagnosed me first with cidp then changed it i have been diagnosed with fibromyalgia and many others! just want to know if im going to catch a break! tanks tom
Hi Stephanie
Itsa relief for me to hear that someone else gets seizures. I was told after starting to have them in 2011 that they cannot be linked to gbs. I was told that I haven't still got gbs and that it is a function disorder. My symptoms don't fully fit that condition. I think the problem is that unless you have a consultant that specialises in the field, they can miss so much due to lack of experience. When you get the burning in your hands and feet put them in a bowl of ice water to numb them, that should help. I am on gabapentin for my seizures and also diazepam all of which are suppose to relax the muscles. I really hope things improve for you. Take care
Know I did not have the problems you had once I started getting better.
In the beginning, yes, I too had numb feet and hands. I remember not being able to use a fork to eat because I could only pick up food with my fingers - did not have the coordination for a fork.
Well, it looks like you are in good hands - seeing doctors. I did not have diarrhea, as I recall. I did lose a lot of weight at the time - even though I could not move much. Apparently, I did not have much of an appetite.
Nebretta
Hi Stephanie -- Sorry to hear that you've been having problems. Have you looked into Celiac Disease? Like GBS, it too is an auto immune disorder. Or perhaps you are taking a nutritional supplement or medication with side effect? From my personal experience I know all too well that GBS sucks, but don't stop searching for an answer. Feel better soon!
Hi Stephanie. I was also diagnosed in 2013. Have you tried swimming? i cant swim properly but it has helped me with the pain and made me stay more supple. My mum or a friend takes me as I need help but it has been worth while. Physio have cut me to once a month so I decided to do something for myself. Do you feel that the medical profession do not know enough about GBS? Don't give up. Get help for your anxiety so it doesn't take over...doctors understand that atleast. Take care you and keep talking. Talking to people who share this awful syndrome will help you too.You are not alone even at times when you feel are. Big hugs xx
Oh my gosh Stephanie..........was that me talking? haha I am going through the exact same. I am only 28 and I feel like an elderly person. I was first told I had GBS only 3 months ago after suffering a Gastro Virus. I feel like nobody understands. I'm more or less housebound now. I'm sad and I really wish I could give you advice. I'm so sorry you are suffering like us x
Im sorry to heat youre going throug this. I dont like to hear that you’re having trouble eating, and having diarrhea isn’t too good either. Did you see your neurologist? It’s very important to have a neurologist whom you trust and who has experience with GBS. Our first experience with a neurologist was bad (we went to the first one who would take us, you know they give appointments months from the day you need them) he had little experience with GBS. We wasted three months. My son was very slowly getting better after the IVIG, on his 10th birthday he got a sinus congestion and had a setback. We’re now in the hands of a fantastic hematologist and an experienced and empathetic neurologist. He’s on steroids, they worked great for him and is now at 90% of his strength. I know GBS can be depressing and scary. Hang in there and continue looking for answers. If you get worse and doctors are not helping do go to the ER. I’m in San Antonio TX. I also have a fantastic doctor in Mexico City believe it or not, he’s very experienced with GBS and even answered my emails and phone calls. Neurologists give you appointments the very next day there and they Are good. Many of them have studied in the US and then go back to practice in Mexico. I know this doctor since he treated a friend of mine and his daughter, both with GBS. Only bad thing is insurance won’t cover it unless it’s an emergency. I did get a refund for my sons MRI when I went there for Thanksgiving and he started falling often, at his weeks at point of GBS before getting diagnosed. You need answers, you need to feel you’re in good hands and being taken care of. Feel better!
One more thing, going to see an hematologist is very useful, it’s an autoimmune problem, hematologists study how the immune system is responding and what is triggering the reactions. Neurogist treat the effect of that autoimmune reaction, so I strongly suggest having both, an hematologist and a neurologist. Good luck!
Hello Samarho! it is so sad that these kids have to go through this! im sorry to hear that your son has gbs! it is very difficult to understand when you go from working to jobs , driving , not doing the things you used to do with your kids, i miss that so much! i bhave many doctors and my neurologist is fantastic! i just have one thing after another yes it seems as ifg my immune system is very low sfter i got gbs and things getting worse ! i progress then regress with exercise and strenous work! like washing myself! i can only toerate warm water! i will have to try the hematologist i do not have one of those yet!!
Samarho said:
Im sorry to heat youre going throug this. I dont like to hear that you're having trouble eating, and having diarrhea isn't too good either. Did you see your neurologist? It's very important to have a neurologist whom you trust and who has experience with GBS. Our first experience with a neurologist was bad (we went to the first one who would take us, you know they give appointments months from the day you need them) he had little experience with GBS. We wasted three months. My son was very slowly getting better after the IVIG, on his 10th birthday he got a sinus congestion and had a setback. We're now in the hands of a fantastic hematologist and an experienced and empathetic neurologist. He's on steroids, they worked great for him and is now at 90% of his strength. I know GBS can be depressing and scary. Hang in there and continue looking for answers. If you get worse and doctors are not helping do go to the ER. I'm in San Antonio TX. I also have a fantastic doctor in Mexico City believe it or not, he's very experienced with GBS and even answered my emails and phone calls. Neurologists give you appointments the very next day there and they Are good. Many of them have studied in the US and then go back to practice in Mexico. I know this doctor since he treated a friend of mine and his daughter, both with GBS. Only bad thing is insurance won't cover it unless it's an emergency. I did get a refund for my sons MRI when I went there for Thanksgiving and he started falling often, at his weeks at point of GBS before getting diagnosed. You need answers, you need to feel you're in good hands and being taken care of. Feel better!
If it is a Celiac problem, any doctor can order the simple blood test. Since I had been observing a gluten free diet the blood test came back negative, mine was diagnosed through capsule endoscopy. You can get diarrhea as a side effect of many things, just begin by eliminating and observing your body's response.
Lily said:
Hi Stephanie -- Sorry to hear that you've been having problems. Have you looked into Celiac Disease? Like GBS, it too is an auto immune disorder. Or perhaps you are taking a nutritional supplement or medication with side effect? From my personal experience I know all too well that GBS sucks, but don't stop searching for an answer. Feel better soon!
I just saw a Neurologist at a teaching hospital who ordered the blood test for Gluten for me a couple of days ago. I've been struggling since February with a re-flare of symptoms. It's been tough to recover this time so I completely understand the struggle. I'm actively pursuing more experienced medical care and will check about a Hematologist today.
I sure hope they can figure it out! i go back to my neurologist the end of this month! hopefully , he can tell me more about what is going on!! i have never been so scared ! the last time just hit me suddenly, know knowing that it can paralyze me is really devastating to me!
yea its some bad stuff I have some question when it first happen did u have trouble peeing and pooping I haven't been pooping that good and I been worry went to the doc they keep giving me med but nothing work
Have you been bed resting a lot? I had a lot of trouble with bowel movements when I first got diagnosed and was limited to my bed.