reoccuring symptom

Hi JoJo! I get problems at times with incontinence. UTI’s cause mine! And a weak bladder due to having a neurogenic bladder. They can offer meds that will help this and also there is a surgical procedure that to can help. Tacking up the bladder. Seeing a urologist for this is the best option. Hope this helps! You are not alone! Hate being that way. Mine comes and goes!
Hugs
Linda H

sorry no info

jojo,
If you are going often, could be your bladder is not holding enough urine. I was going often, urologist had a test done (don’t remember name of it) that measures the amount of urine the bladder holds. My bladder was only holding 30%. He put me on detrol, it helped but gave me belly bloat.
I just read on detrol and vesicare, both of them do basically the same thing and have almost the same side effects.
Good luck
Shirley

I just went through the bladder testing myself. It is worth it to know what is going on that you might not be feeling. I have no feeling, neurogenic bladder. There are many possible treatments for bladder problems. I think getting a dx would be the first place to start though. Take care.

Hi Jo Jo! One thing I have learned over the years is family and friends not wanting to hear how bad you feel. I don’t know why they are this way but even my mom changes the subject when I mention how bad I am that day.
Husband gets up and walks out of the room and my children end up on the phone making an excuse saying something like they have another call!
I have even had doctors say “Well you look so healthy”
Hate when they say that saying! If only they could crawl in my body and feel my pain!
I don’t even bother telling my family how I feel anymore. I just get quiet around them when I feel bad. And then I come to the forum and let out my steam. So anytime you need to vent about how bad you feel, Come in here and let it out.
Seems like normal people don’t understand what we are going through. But sick folks like me. We know how it feels and understand what you are going through. Hugs! Hope you feel better soon!
Linda H

sorry no info

Don’t know if this helps or not but we talked to our daughter today and her doctor thinks she may have RSD brought on by her GBS so I looked it up and this is what I found.

[url]http://www.neurologychannel.com/rsd/index.shtml[/url]

sorry no info

sorry no info

Have they done any urodynamic testing on you to determine the cause of your bladder problem. I am a physical therapist. There are PT’s who specialize in bladder issues but you NEED a PT who SPECIALIZES in that!

My boss does that and her results are amazing! That being said, if it is purely neurogenic, they would need to do urodynamics testing to see if training the muscles to work in a coordinated way will help.

It that has not been done, I would ask for it. I would also get a blood test for diabetes since it is possible that this could be an initial sign. It is probably not but it is easy to check for and rule out!

Best of luck to you.

I have had the urodynamic test done by an Air force urologist. They were not looking for a cause as there seemed to be no question about it being caused from the GBS. What they did the test for was to determine how much urine the bladder was holding, 30% in my case. I was put on detrol and given instruction about muscle control, with follow up in 3 months. Had the diabetes testing in hosp.
I didn’t know there were PT’s that specialized in bladder issues. Learn something new everyday.
Thank you
Shirley

Hey JoJo! See if you can take a drug called Pyridium. It is an RX drug but also over the counter. I take the Pyridium before I go to bed and I use the bathroom before I go to sleep. Also! Any Caffiene you are on might pay to stop drinking. Drink juices and avoid Caffiene drinks. I was constantly wetting myself all during the day and night and when I stopped drinking sodas and went to Sprite O that has no caffiene my bladder eased up some. Plus I take that Pyridium and it turns your urine and orange color but helps ease the urge to urinate alot. If your doctor say’s it’s okay to take it. Try that out! Ever since I got off caffiene and started taking those pills, I finally stopped wetting on myself! It’s worth a try! It might help and then it might not but right now this is worth trying! Hope this helps!
Linda H

Amy,
My urologist had me go every two hours whether I had the urge to go or not, then after the flow stopped I was to count to ten and try to get more urine out to empty the bladder. When I first started this months ago it did not always work and many times when I felt the urge to go I couldn’t make it to the bathroom in time, I had to wear depends. I can tell now that my bladder is holding more urine as I have more urine output now and most of the time I can make it to the bathroom in time. I only go when I feel the urge now and have not worn the depends in a long time but do wear the poise pads just in case. I am still on Detrol, it helps the bladder hold more urine. It took forever and I didn’t think it would ever get better but it did, not like it was before GBS. It’s a strain getting those muscles working to push the urine out of the bladder.
It’s hard for you but keep trying and don’t let your accidents or negative remarks get to you.
Take care
Shirley

Amy! I truely feel for you! We went to Lowes and Walmart today and both times I had to run as fast as I could to get to the bathroom. Only problem I can’t run anymore. When I get that way I wear those thin pads that help the leakage. My biggest problem is at bedtime when I am sleeping. And have seen me wet the bed and didn’t even know I had to go! You probably have a Neurogenic Bladder. That is what they told me I had! Major pain! Mine has improved some but I still have spells. When I go shopping from now on, I don’t plan on drinking anything until I get home. I almost broke my neck holding on to the shopping cart trying to get to the ladies room. LOL! Twisted my ankle on the way there and am up tonight hurting! Hugs Amy! Hopefully these training exercises will help!
Linda H

Amy,
I feel so bad for you with all you are going through and now with the flu.
You have made several comments on how your parents feel. It doesn’t help you when those close to you don’t understand what you are going through. Please read on the spoon theory. If you can print it out and give it to your family and friends to read, they may get a better understanding of the fatigue issues you have. The spoon theory is about lupus, substitute lupus with GBS.
Here is the link
[url]http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf[/url]

Hope you feel better soon
Shirley

I used to write alot of life and health insurance and I heard alot about bladder problems. It seems like a few years after having children has something to do with it. There is a minor surgery they do that is called AP Bladder repair. Like I said, it is a real common problem and you probably heard of this kind of repair. I don’t know if this is what you are talking about or not. I hope this helps anyway.
God bless,
Drummer

Hi Jojo,
I am a mom of a 12 y/o with cidp. Kevin does not use a cane or have any obvious issues. So he too gets “crap” from my husband and son sometimes. I see the pain and frustration in his face when this happens. I do not know you or your family situation, but would your mom consider counseling w/someone who specializes in chronic illnesses? At least it could give you a neutral enviroment to express how you feel freely.
What is the reason your mom discourages medicine? Is it possible your doc could talk to her and tell her the reality of nerve pain. It sounds like you are 18, could it be possible for you to get the meds and keep it to yourself?

About the neurogenic bladder. It may be a good idea to get the test for several reasons. In my opinion a very important reason would be to substantiate your claims with medical proof so that your mom can realize it is not laziness but a reality. An even more important reason is if the bladder does not work properly, the urine can spill over into the kidneys and cause renal failure over time. A girl Kevies age has this problem and just returned from Mayo with this info. Which leads me to my last thought. You have mentioned on more than one occasion that there is increased tingling in areas and you feel that illness brings symptoms of flares. Is it possible to visit the idea of a cidp dx? If it were cidp, ivig could start bringing you back to where you were.

Speaking as a mom/caregiver. I know YOU are going through more than anyone who has not experienced this could even imagine (your mother, myself) but… your mother too is going through a difficult time as well. This is not the plan we wanted for our beautiful babies. It is hard for us to accept and watch. There is a different kind of pain we feel, it hurts us just as much to see our babies suffer, we want to fix it and make it go away but cannot. Everyone is different in how they react to times of trouble. Some are kind and compassionate and complacent, not always good because we become enablers, others are stern and unemotional, maybe because there is denial or sadness and not accepting it or attatching it keeps the reality of it at bay. I probably fall in the first category and I worry that I am doing Kevin a disservice by ill-preparing him for the world by babying him too much. Maybe I am too easy on him regarding headaches and pain and doing chores. I am going to try to work on finding a middle ground this year so I can start preparing him for when he gets older.

Maybe you could just talk to your mom, heart to heart and let her know you appreciate and love her and just ask her to be patient with you and assure her you are indeed trying your best, it truly is out of your control. Best wishes to you and your mom, hoping you both can come to a middle ground.
Dawn Kevies mom

Jojo,
Is there any way you could just have a friend fill the scrip? Is there a particular reason your mother feels so strongly about meds? Maybe you could have her read some posts here of others and their description of pain. Would your GBS doc be willing to intervene, or maybe a hospital social worker? My heart aches for you, so much on your plate, stay strong and come here, we will listen.
Dawn Kevies mom

Hi Jojo,

I just wanted to show my support, you are going through so much, I hope you will soon get relief from the pain. Our bodies are very important, GBS taught us that, but the mind is important too. Make sure you get enough emotional support, ask your friends/relatives, if it doesn’t work with them or it’s not enough what about counselling, it can really make a difference. This forum is a great place to vent and share our stories, I don’t know what I’d do without it, it keeps me sane, but it’s no substitute for speaking with somebody face to face.

Best wishes