AnonymousNovember 6, 2010 at 7:56 am
Hope you get replies from those with CIDP that have the same problem. Mine is with GBS.
Yes, I did. One Dr. had me on urecholine (not right spelling) and flomax. One medication helped the bladder hold more urine and the other helped the flow.
It didn’t correct the problem but helped me not to go as often.
A military Dr. took me off those medications and put me on detrol. It also makes the bladder hold more urine. I was on detrol over 2 yrs. and always felt miserable in the abdomen and had a dry mouth.
This lack of saliva in the mouth caused swollen saliva gland in the mouth. I stopped taking detrol.
I couldn’t go without depends even with the medication.
It was nine months after first getting GBS that I could go without depends during the day. I wore pads during the day as I couldn’t make it to the restroom before the urine flow would start.
Wore depends at night 1 1/2 years.
It’s just over 3 years since GBS and I can get 4 to 5 hours sleep without waking to go. In just the last 6 weeks I have been able to sleep all night 🙂 (7 hours) a few times.
Now if the feet and legs ever catch up to the bladder I’ll have it made.
They say if GBS attacks feet and travels up the body it heals the opposite of what you were attacked. Watch out legs and feet, Your next! 😀
Wishing you continued improvement.
AnonymousNovember 6, 2010 at 11:38 am
I did not realize what shape you were in until I read post you made on couple of other threads.
Please forgive me for making light of my situation. Humor is alright at times for myself and others but the shape you are in and the way you are deteriorating I understand that you want help not humor.
I am so sorry.
AnonymousNovember 6, 2010 at 7:48 pm
It was due to a multi-hour surgery for an injury that took a very long while to heal – last year.
I’d agressively sought out a PN diagnosis long before that as my own initial PN was progressing up my torso…and we all know those fears! Luckily it was just the ‘skin’ and nothing more, PN-wise, but that FEAR is ever present.
For some, just BEING in one place can cause pressures on nerves w/bad results.
However, many who have GBS/CIDP often have ‘autonomic’ issues as well, and these are downright worthy of respect and fear. Kicker is, one never knows IF or WHERE the auto issues mite hit.
Tho we all try to live in hope? There must be a respect of the ‘what can happens’ and maintain a sensitivity about when the ‘red alerts’ go off.
I’d have a LOONG SIT DOWN with your docs about this issue! I’d also web up the ‘full prescribing information’ of all meds you are on…why? Because either one or more aren’t ‘helping’ in this quarter [side effects] or a drug or two are working against each other… docs do NOT KNOW all of this? It’s up to YOU to be the ‘researcher’, bring something valid and VERY LEGIT in print to the doc and ask outright: WHAT GIVES? Be nice about it, but be assertive enuf to show a heap of ‘concern and confusion’..AFTER ALL? HE/SHE’s got access to all the really good medical sites…make them work for YOU! AND FOLLOW UP! I know I hated being in the ‘garments’? I can’t think of anyone who loves it, per-se? [Other than it’s better than nothing?]
We are adults and should be treated with respect regarding these issues…we’ve got brains just not so much brawn of late…
Keep faith in yourself that this CAN heal and sooner rather than later! Let us know… what your docs say? I’ll bet we can all laugh about THAT! Good things…till later
AnonymousNovember 7, 2010 at 6:24 pm
i have them as well i was cath a long time with the gbs. now cidp. been to continence therapy did not help. they tried because they thought it would wake up the nerves, now cidp is progressing. i get ivig 2 times a week evey week i wear pads and to go every couple of hours. mornings are the worse. also cut out caffiene it stimulates the bladder. i go to a urologist they can give a list of foods and drinks to avoid, that helps a lot.
AnonymousNovember 8, 2010 at 10:38 am
Shirley no problem. Through all of this I am still trying to smile through it all. I guess I looked at worse case scenarios for me as this disease progressed. I am a tad vain, and the canes and then walker were huge kicks in the teeth for me. The inability to walk upstairs was a huge blow, but I am having a hard time wrapping my head around wearing a diaper.
Still hoping for a magic pill on some level
AnonymousNovember 8, 2010 at 6:07 pm
However? Yes having to wear ‘diapers’ can be disheartening, but they are soo much improved these days over years ago! In that aspect, they can and DO save face, for me, at least. [IS your issue here really permanent? A neruo mite not be the one you want to see, rather a gastro..tho good ones are really hard to find. Best to get this sorted out before you go into a serious funk about it.]
Canes and walkers? They are necessary evils or rather tools to be used to keep out of serious additional injuries and insults. As I’ve improved after set backs tho, I use two canes instead of the walker, as I can get into places w/less hassle [don’t know about you, but some house doors just aren’t wide enuf.
As for stairs? I can ‘do’ them IF I must. But for the most part I tend to avoid them and curbs if I can help it.
Getting help to build strength to get around better and safer is harder now. Insurances cover less, and too many ‘physical therapy’ places seem akin to ‘puppy mills’- simply churning folks in & out and gathering $$’s w/little real research or sensitivity to what problems OUR medical issues present. It is essential to learn and find out how to do as many strength & balance building exercises that can be done safely and effectively!
Please keep your own personal safety a first priority! Working on the ‘getting around’ part and keep faith that it CAN BE DONE!
Now go tentatively push yourself in some safe ways!
November 9, 2010 at 8:51 pm
I have not had any bladder control issues but almost all my CIDP symptions involve pain not motor or controll issues. Mine started with severe pain in my groin. Thank goodness this went away after starting IVIg. Now it’s in my stomach and bladder. Thankful Tramadal takes care of most if it. I do have concern if it progresses I might some day could result in controll issues.
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