Bladder incontinence

[cathys20]

Hi I was wondering if any other of you with fnd, dystonia, or movement disorders, have had problems with your bladder. Either not being able to go at all or very little and with your bladders spasming to the point of bleeding or just spasming? Trying to figure it all out. Have been pretty sick with this lately. Thanks for any help. God Bless, Cathy

[Lindy0421]

Hi cathys20. Yes, I have had severe bladder problems. The inability to void or empty. My urologist wanted me on a medication that helped my ureter expand as it had narrowed. This medication also expands medium sized arteries. My gp didn't want me on it as I was suffering hypotension and the particular medication the urologist wanted me on would increase my heart rate dangerously. Just had a bit of a brain storm today. I have had a lot of dental problems since taking pain meds. As they cause dry mouth and cause corrosion of teeth. My amalgams have been falling out... Mercury amalgams. Today a large tooth just shattered and I had a large mouth full of mercury.... It was almost like my heart stopped, I realized my FND problems started when I started seeing the dentist regularly 8 years ago. Looked up Mercury poisoning, and it causes neurological disorders, inability to urinate , dystonic convulsions and the list goes on. I had to stop reading it. The symtoms were me all over. I felt sick...

Will mention this breakthrough to my neurologist next week. Don't want to put ideas in your head, but have a look at Mercury ( amalgam poisoning). Let me know how you go...

Lindy0421

[Anonymous- in reply to Lindy0421]

Hi Lindy0421,

You wrote a very interesting post. I too have had a "mouthful" of mercury fillings (installed over several years by a very corrupt dentist in my childhood), for 40 years. Because of their age, they began cracking my teeth, causing some of the back teeth to split apart. One tooth fell apart and half of another tooth fell off. They were more than half Mercury. In recent years I had all mercury fillings removed, as I was very tired of severe health problems, thus leaving me with a mouthful of crowns and porcelain fillings. My point is that I've had a lot of mercury in my teeth for decades! I have also struggled with a long list of similar symptoms, and autonomic symptoms for 8 years prior to the FND symptoms. Is there any one else who has/had mercury fillings and a history of illness?

[Caan]

Yes to mercury, one shattered tooth, slowly changing fillings. Yes to bladder started self catheterization about 10 years ago. Helped to keep me urinating when bladder full only. Now superpubic catheter, and botox every 9 months. First cause one of bladder nerves died, bladder out of control, every hour at best. Then stopped working. And I didn't even notice. Thought just settled. Went to A&E for something else.

The spasms got so bad they meds limited use. Would send my whole body into spasm. Now have 6-7 good months, brilliant. Causes are great, but right now I am for getting the symptoms under control. I

[angelite]

Hi Cathy,

Sorry to hear you are suffering this way-no personal advice I'm afraid as I have not experienced this.I tend to be the other way ( stress and urgency incontinence ) and wear protection.I know of a few relief methods for neurogenic bladder,ranging from pressing down on lower abdomen to aid self voiding,up to self catheterization,and other such as Caan speaks of.If you are not fully emptying your bladder you could be at higher risk of UTI ( Urinary Tract Infection ).What does your doctor think ? x

[angelite in reply to angelite]

Sorry,meant to add that blood in the urine is a common symptom of a UTI-if you have not already been checked for this it would be good to do so x

[Hidden]

Hi there Cathy 20,

I too have bladder problems

Started off with Cystitus like symptoms -but no cystitus.

then problems got worse after Hysterectomy in early 90s..

after I had had to return with a bad infection.....

After that,

-lots of pain -but no infection...

some time later,found I could only properly "spend a penny" by urinating while standing

A few years later,heavy bleeding

which was investigated.

1st cystoscopy -nothing wrong,no cause found

2nd cystoscopy "you have a Cystocele,need an op *now*

Got 2nd opinion from a very good Gyny.

"problem,what problem? I see no Cystocele, *dont *have the op!!!"

Meanwhile (,I think it was after the 2nd episode of heavy bleeding,)

I saw a Nephrologist (kidneys) who told me he was pretty certain bleeding was from kidneys (as it was so heavy) but he could see nothing to show why,or exactly where it came from

In the meantime,occasional checks would show microhaematuria (small bleeding)

with no infection or pain.

Years later,I had another major bleed,and another Cystoscopy -(in Austria)

"this lady absolutely does ****NOT*** have a Cystocele,wrote the urologist!

-but *he* couldnt find any cause for the bleeding,either!

Since then,carried on with minor bleeds (dont really bother testing myself any more though)

and tests show I dont (always) empty my bladder (lots left in)

Then some years ago,began the "spraying"

ie urine will go all over the place !

at first this was occasionally -and generally when muscle spasm were playing me up.

Gradually,over years,this has got very much worse;so that its happening every time...

I need to use a Urinal, to save soaking everywhere

also not so easy,if back and etc in spasm

-and no fun having to take it everywhere I go!

Not to mention my raised,sloped toilet seat (so I can go to the loo without spasms) that,most unfairly,has to be counted in my baggage allowance

Its an absolute misery!

And now,after being sent to A& E with back pain and difficulties, they found blood in my urine,and,combined with other probs,want me to be investigated again

- Unless they are going to be doing something different,seems precious little point,as far as I am concerned! ........

Mind you, the doctor did clear one thing up -whichI think, is important for us ALL to know...

She said they wanted to send sample away to test for infection..

"but,says I,you did a dip stick test,and said there is no infection!"

Yes she said...

"But the dipstick is only a *general* sort of test,it does not show everything"!

-which obviously means,that if we are people who have had a lot of Urological type problems,and are having symptoms, but the dipstick says all clear,they should surely be *routenely* sending off for analysis,instead of fobbing us off with "all clear"

just to be sure....

For example,

Years ago,while living in Austria, I had to go into hospital (same back/spasm probs)

she said I had a severe urine infection,and why ever hadnt I gone to the doctor sooner,instead of letting it all get so bad!

-Now I dont get the normal symptoms,but i had been wondering for a few days if I might have an infection,and so ,in fact,I had *had* a dipstick test a few days before going into hospital -which had said everything was all clear!!!!

I have Googled urine spraying,over the years,and apart from porno sites came up with nothing...

But last week I tried again,and this time,I struck lucky!

It was an American site,and about "Pelvic syndrome disorder"

- and to my amazement,it seemed,in so many ways,to be describing me!!

-including,unexplained bleeding!

-and including the bladder going "flip flop" in my tummy (when I'm lying down trying to have a nap,for instance)

Was going to put the link up for you-but couldnt find it-sorry

Hope things improve soon...

[cathys20 in reply to Hidden]

Thanks so much for your reply and sharing your story. I am so very sorry to hear of all of your troubles in this area. It is not a good thing for sure, I share in the back pain, spasming, bleeding, incontinence, but it has only just begun a short while ago now. So frustrating, just because we never get a real answer and it takes so long to get any. I never want it to be something bad, but just once to hear this is it, this is what we will do, and you will be good to go. Or maybe that fairy tale is for Cinderella, not fnd. God Bless, Cathy, PS having a tough few days here, don;t want to be negative, just tired I guess.

[Hidden in reply to cathys20]

Hi there,

thanks for replying,and sorry you are having a hard time also

Well, I'm sure that they *will* find the answers "one day"

(as they did with MS)

-But as far as I am concerned,"One day",simply cannot come fast enough!!

Did I say, I asked the doctor if she could give me some Diazapam to take the next time i have a really bad back/spasm do (really bad ones occur,touch wood,every year or so)

I said that perhaps,if it released the spasms *quickly* it might prevent the awfl "snowball effect" of everything rapidly getting word=se and going down hill....

She agreed it was worth a try...

(well,she has no other solutions,or answers,does she?

Wishing you all the best,and that things improve for you,

Monica 3b

[Hidden]

ps, I too have a mouth full of Mercury -also because of a bad dentist, many years ago,who it turned out, was filling my teeth even though i had no problems

[giltnane]

Hi Cathy I do have some bladder issues when I need to go I need to go and can't hold it which is no fun when your on the stair lift waiting for the kids to get out of the bathroom. I also have constipation often don't go for 7 -10 days. have you tried some always pads they can be helpful when your out I have used them from time to time