Hi all, wondering if anyone have anything similar.
It's been 8 months since my 11yrs old recovering from GBS. She's been having some abdominal pain & doctor thinks it is because she doesn't empty her bowel fully but has nothing to do with GBS (even thought she empties it everyday, but not doing it fully somehow). lately I find she chokes more easily then before. & she told me yesterday she sometimes experience little urine leakage when she laugh. Apart form these she's basically fine.
Does anyone has anything similar? (Sorry, I know it is a bit embarrassing) I suspect GBS has weakened some of her organs functions. Could that be possible?
Hi Evalyn, I haven’t experience it myself but have heard my doctor mentioned some of his patient do have something like that others include bowel movement. Better to have it double check by another doctor. If you want to check her bowel movement like how long does it takes her to digest and poops the waste out maybe you can try some food like pomelo, beetroot, red dragon fruit or corn.
Hi Steph, Thanks for the tips. Will try consult another doctor as well.Thanks!
Steph said:
Hi Evalyn, I haven't experience it myself but have heard my doctor mentioned some of his patient do have something like that others include bowel movement. Better to have it double check by another doctor. If you want to check her bowel movement like how long does it takes her to digest and poops the waste out maybe you can try some food like pomelo, beetroot, red dragon fruit or corn.
For me GBS affected every nervous system, including my autonomic nervous system. Some of this was mild so only i noticed it, but for the first time in my life I found I sometimes couldn't get enough oxygen when breathing for a few seconds. Kind of weird but it was like my body forgot how to breathe on its own momentarily. I also had BP problems and tachycardia.
The choking thing I can kind of relate to, I developed a problem with certain words. I remember specific was a real problem for me (I kept saying pacific). All resolved now, but a little odd at the time stammering your way through a sentence and muddling words up.
And as for strange weakness - I could walk, run, drive a car, climb stairs but could not for the life of me stand on one leg to soap my feet in the shower.
I encourage you to check with a second doctor if you're unsure, but if these are problems she didn't have before then for my mind they could be GBS related.
At last I can find someone who can relate to. Doctors keep telling me these has nothing to do with GBS, but she didn't have these issue before.
Evalyn
Nojabold said:
Hi Evalyn,
For me GBS affected every nervous system, including my autonomic nervous system. Some of this was mild so only i noticed it, but for the first time in my life I found I sometimes couldn't get enough oxygen when breathing for a few seconds. Kind of weird but it was like my body forgot how to breathe on its own momentarily. I also had BP problems and tachycardia.
The choking thing I can kind of relate to, I developed a problem with certain words. I remember specific was a real problem for me (I kept saying pacific). All resolved now, but a little odd at the time stammering your way through a sentence and muddling words up.
And as for strange weakness - I could walk, run, drive a car, climb stairs but could not for the life of me stand on one leg to soap my feet in the shower.
I encourage you to check with a second doctor if you're unsure, but if these are problems she didn't have before then for my mind they could be GBS related.
I suffered from very similar problems: the choking, urine leakage and bloatedness, all have improved in time (they didn't start until about 4-5 months in for me). My doctor said it was because my autonomic system was affected and that she would expect it to improve in time. It has to a certain degree (I struggle to swallow spinach and kale) but usually my swallow is now ok. The urine leakage has stopped (didn't do anything, just got better I guess) and the bloatedness has lessoned quite a lot too. I do take a few things for the bloating, can't be certain that they help because I may have improved without them (always the way when you try something) but I do feel that they have helped. I take Kefir (a live yoghurt that you make at home full of good bacteria) and Collustrum tablets which are supposed to be good for digestion. If you want to know more about either then just reply and I'll get back to you.
Thanks for your reply. Knowing others has similar symptoms make me feel a bit better, at least I know I am not making this up. I am glad to know your condition improve. I'll try the yogurt & the tablets. Thanks for sharing this with me.
Take Care.
Evalyn
Maxwell690 said:
Hi
I suffered from very similar problems: the choking, urine leakage and bloatedness, all have improved in time (they didn't start until about 4-5 months in for me). My doctor said it was because my autonomic system was affected and that she would expect it to improve in time. It has to a certain degree (I struggle to swallow spinach and kale) but usually my swallow is now ok. The urine leakage has stopped (didn't do anything, just got better I guess) and the bloatedness has lessoned quite a lot too. I do take a few things for the bloating, can't be certain that they help because I may have improved without them (always the way when you try something) but I do feel that they have helped. I take Kefir (a live yoghurt that you make at home full of good bacteria) and Collustrum tablets which are supposed to be good for digestion. If you want to know more about either then just reply and I'll get back to you.
This is just my experiences. I'm male and 58 years old so consider yourself warned this may not apply to her / your situation. Open and frank communication with her Doctors is the best advice I can give. But you have to have questions to ask. So along with the ideas in the other reply's. I'll add
Bowel / intestine problem - My Dr's said I was dehydrated which along with weak muscles led to constipation and other things like being backed up. They gave me 2 bags of IV solution and told me to drink a lot more. (I Can't tell when I'm thirsty) If her urine is dark that's a sigh of dehydration. I would ask the Dr. to check. If it turns out she is dehydrated consider adding different fruit and vegetable Juices, the more natural the better.
Leaking urine - My Dr's say time will tell but for me drinking more fluids made it worse. While I wait on time to tell they have me doing the kegel exercise.
Swallowing - I found I can swallow a normal to larger bite / drink easier than a small one. (I choke on my own saliva). They have me swallowing while I stick out my tongue and bite it to help, How it helps I don't know but it has helped.
Some physical and occupational therapy might be needed. Again discuss with her Dr's.
I guess this GBS thing affects us in many ways. I've seen a few doctors. Only one doctor tells me her condition could be related to GBS. I just find it frustrating sometimes, when no one can tell me for sure how her body is affected by this illness.
I'm thankful for the support I've received from this community. Wishing you a full recovery too.
Hey Evalyn! What a strong daughter you have! I am almost 5 months into my recovery and I am still completely numb from the neck down. As for advice and experience I think that MoonE hit it on the head... and I'm a 23 year old female if that helps.
No.1: The dehydrating point was great I can also not feel when I'm thirsty! I also have problems with urine leakage when I laugh. When I go on outings with my mom I wear a panty liner or maxi pad to be sure... A urologist might be able to help her with those muscles maybe? You experience muscle weakness in your arms and legs why not in your internal muscles??
No.2: I'm not as far along in my recovery, but I hope that this helps you in some way! I can't feel my bowels at all, and when I told my doctor this he did voice concerns about the same thing your daughter is going through. It is hard to utilize the rectal muscles to completely get everything out. They almost feel like I can't access them which is the weirdest feeling ever! What I've found helps is to sit a little longer than I normally would and make sure that I'm completely done. Maybe ask her if she can feel her muscle working, if it feels different from before, etc...
Swallowing: I also choke on smaller bites more so that bigger bites. Seems backwards but it's easier to handle. I have to really force myself to take my time. Everything while recovering is strange because things that were subconscious before now takes effort and planning. Same thing here.. maybe ask her how it feels different and see if an occupational therapist can work with her on the motion of swallowing again to make it seem more like a patterned movement again!
We are like cars, if something is not functioning correctly then the rest of it won't. I would say it does have something to do with her recovery. I found that I was prone to infections more than ever before. See if she has a UTI or some kind of infection. The doctors will tell you that one has nothing to do with the other but it does.
Thanks sip1991 for youe reply. Just wondering, does your doctor recommend you to use laxative? my daughter is using it, but I'm worry she'll become depends on it.
Evalyn so glad anything I could say was helpful to you! Yes I use miralax but I stay away from stimulant laxatives. Also, I try to stay away from foods that are hard to digest! Good luck and best wishes!
Hi Evalyn, my daughter also had GBS last year, at age 13. It was very difficult on her and everyone. She is experiencing the same types of abdominal pain that you mentioned. We are taking a short break from going to a doctor, for sanity sake.:) But, i ask her about the details of the pain, each time that it shows up. May end up at the doctor soon, if it is still there. I will keep you posted!
Thanks CSIL. My daughter is getting better now & I'm giving her a break from medication. Hope your daughter is recovering well too.
CSil said:
Hi Evalyn, my daughter also had GBS last year, at age 13. It was very difficult on her and everyone. She is experiencing the same types of abdominal pain that you mentioned. We are taking a short break from going to a doctor, for sanity sake.:) But, i ask her about the details of the pain, each time that it shows up. May end up at the doctor soon, if it is still there. I will keep you posted!