I'm just sorry the Federal government doesn't recognize that you live in a flood zone and offer you flood insurance.
Since you're paying for a whole vial of botox you might have them inject other places with the leftovers to go with that youthful bladder look! LOL
I dont know if i should laugh along with you or grab the rubber dingy, its not been a fun ride for your time of the great flood, you threw down the anchor some time back and it saddens me that nothing so far has stopped or slowed it to a manageable level.
Surely somethings got to work, botox makes sense but i dont understand the process enough i know but i wish the answers were easier to find. I suppose if botox works and it gives you relief from the floods it would be worth exploring further, though i still wish the issue was easier for you.
Thanks for the update though still wish the news was better!
Amid the ocean, when the option is sink or swim, there lies a very brave woman who writes beautifully with humour, and lucidity sharing her pain, frustration and trials and the tribulations of being on the tidal waves. She deserves to hear how much we all appreciate everything that she does to help others and by sharing her experiences she continues to reach out to us all. I know that I will be joined by others and wonder how many accolades we can come up with....
"The most courageous swimmer in the wildest water"
Love, hugs and sunshine to keep drying the washing.
The urodynamic study was normal? Wow.
Did you "feel" normal during the study?
You wrote this journey beautifully - though know the pain it brings you daily.
I'll pray botox is your missing mitigating factor -that they don't overdue - and you soon sail at low tide.
I am hoping for a resolution for this for you Quix. You write so eloquently about your journey---you convey your trials with a bit of irony and humor. I really do wish that you would write a book..
Ditto what Sarah and the others said. Beautifully written but I'm sorry you are having to endure this pain and it's sidekick, Flooding, to show us your fantastic writing skills.
Here's hoping the Botox will return your bladder to a "more youthful state".
I just hope that this symptom isn't a permanent factor in your life! This has to be one of the most inconvenient things I've ever heard of. And painful too!
Perhaps you should be wearing a sailor cap in your avatar pic! Or at least holding a life preserver.
Yeah, the salad tongs just don't convey the problem. My Uro-G did say that I would likely be wearing pads the rest of my life. She didn't seem to think that, since it has progressively worsened over the last 2 years, it would improve on its own. :((
Wind_and_Water - I was supine during the urodynamic study. All I felt was the progressive filling of my bladder, no spasms felt or recorded. I don't have the problem when I am reclining. It's only when I'm more vertical, so the study did not replicate the conditions of the problem. I didn't realize that during it. And, yes, I have considered that somehow this is a psychological problem.
Well, I'm sorry to hear that - this will make drinking liquids of any kind less attractive.
Most of my problems are due to a weak bladder - any sort of shock, like a cough, sneeze, or high-impact exercise, and I'm leaking. When I'm horizontal, there's a lot less pressure. I wonder how you would have done if you were upright during the study.
Yours is exactly the kind of problem that PT is more designed for, Stress Incontinence. I can't remember whether you have gone through that or not. Are you going to attend the online chat on Incontinence and Staying out of a Nursing Home? The thrust of that talk will not be toward those of use with a strong neurologic damage, but toward the run-of-the-mill person with Incontinence, tho I am going to try to submit a question about us/me/floods/Botox.
It's not that your bladder is weak, it is weakness of the pelvic floor and sometimes of the urethral sphincter.
For severe stress incontinence they sometimes inject around the urethra with collagen to tighten it up along with efforts to strengthen the pelvic floor.
I wish I had been sitting up.
I've never had any PT for stress incontinence. I probably should. I think you're right - there's weakness in that area, front and back. I've also had cramping, sometimes mild, sometimes rather severe.
I'm definitely going to check out that online chat - I'm very interested in what they have to say. (One of the reasons I quit running - aside from the whole tripping and falling part - was that I kept leaking!)
I just realized that, in all the fun and hyperbole, it sounds like I flood the premises all the time. Not so. I always lose most of my bladderfull, but have learned to contain it well with protection. The epic floodings are probably less than once a day. It's the ones in public that are so awful. So, I want everyone to know that my exaggeration is for the amusement of it all - not a painting of real life.
Jen - What? Tripping and falling wasn't enough to discourage the running?
Thanks Quix, for your sharing of this painful issue. I have been experiencing cramping of my bladder as I empty and afterward. Is this normal? It sounds like your cramping comes before emptying (or causes the emptying!) I can never figure out what's normal and what's not...
You sure do have a way with words, Quix! Though it is a very upsetting kind of problem that I would not wish on anyone, especially you.
The problems that you are having have always been a fear in the back of my mind. I have been having a few minor problems with incontinence within the last year and worry about it getting worse.
I was lucky on that the Oxy-whatever med they give for this seems to be working pretty good for me. I sure wish something would work for you!
I was planning on going to the online chat today but I don't think I am going to have time. Will you take notes for me? ;0)
Here's hoping you get some answers and help with this soon...
On what grounds would you possibly think this is a psychological problem? I would definitely keep investigating physical causes and solutions.
Have you considered this... ?
PS: I was surprised to hear your urodynamic test results were normal, because mine were normal, too. I was tested just a week ago.
I agree---don't think this possibly could be psychological. I do understand that after enough symptoms and plenty of investigation, we start to doubt ourselves bigtime, especially if tests come out normal.
Anyone who would sabotage herself in this way, no matter how unconsciously, would also exhibit other very severe symptoms of emotional disturbance. I have known Quix for nearly 3 years through this forum, read thousands of her posts, exchanged lots of messages with her, and generally have gotten to know her psyche. I feel confident in saying that none of her symptoms is remotely psychological.
So Quix-girl, I hope you aren't really considering that as a possibility. Not even just in passing. And not even as a joke. I'm sending you big hugs and wishes that Botox, or something else, begins to work for you, and the sooner the better.
"Anyone who would sabotage herself in this way, no matter how unconsciously, would also exhibit other very severe symptoms of emotional disturbance."
Uh... no. Not true.
I disagree. The extent to which her life is affected by this condition cannot be exaggerated. It would take an extremely disturbed individual to destroy her own quality of life in that way. Such persons do not create this kind of crisis in an isolated manner. There always would be other indications. Perhaps not as obvious, but nonetheless detectable.
I have no interest in haggling over manifestations of psychological disorders on an MS forum, so I will leave my comments at that.
It's only that I have read about women who became "dependent on wearing the pads." I try to note when the bladder is nearing full and I try to send the message to "hold it in" but nothing moves. I am losing more and more sensation in my undercarriage as the months pass. In fact, if nothing has leaked and I "kegel" it will often cause spurting, oddly enough.
I didn't really mean that I was causing this, only wondering if I had become lazy when nothing else was working.
The other thing I have tried is sitting on the edge of a soft chair and mechanically holding the flood back and doing something to completely take my mind off the painful urge. Then when I realize there is NO urge at all - because we all know that an urge can subside for a few minutes only to reappear later with greater strength. Then when there is no feeling that I need to go, I stand up and totally lose it all. It's like the sphincter has already given up and not retightened.
I wasn't referring to acting like a Munchhausen. But my mind has review every possible scenario I can dredge up looking for a solution.
I just attended the Incontinence Chat and his answer was that neuromodulation might be effect in rerouting damaged nerve pathways. Since I stopped Physical Therapy just before that part, I think I will request another referral for PT and explore that option before Botox.
Steph - I have also had the cramping with urination and the sharper cramp/pain afterward. For me those are much like the pain that accompanies a UTI. But, I didn't have one. So, I know what you mean.
I would look toward the bladder irritants like caffeine, alcohol, spicy foods, artificial sweetners (most specifically aspartame) and carbonated beverages. Dr. Crawford specificallly listed these in the chat today.
Addi - I am currently on Oxybutinin ER at twice the recommended dose. Minor improvement.
I should lose weight.
WAW - Yes, Dr. Crawford mentioned Percutaneous Tibial Nerve Stimulation and EnterStim both of which I will ecplore with my Uro-G. I didn't understand that these have been tested in MS and have often worked. This is what I meant by learning everything and becoming a guru in it. Sounds like you know a lot about the subject also. We should collaborate.
Steph - thanks for your vote of confidence. :)) <- that's me smilling and making a double chin.
I am glad for the opportunity to discuss this on an MS forum. It is very relevant.
(1) Is it possible for an MS patient to experience incontinence with a psychological basis?
Yes. It is common for psychological factors to contribute to incontinence -- alone or in combination with a physiological cause.
It is a harmful to tell MS patients that psychological factors are only relevant to people who "exhibit other very severe symptoms of emotional disturbance."
Indeed, the vast, overwhelming majority of people who suffer incontinence with a psychological contributing factor are NOT "extremely disturbed individuals."
It is worrisome that some MS patients might exclude consideration of psychological factors due to such an erroneous caricature.
(2) Are MS patients scared by the very *suggestion* of psychological contributing factors for incontinence?
Yes. Yet it would benefit MS patients to become more aware of, and more accepting of, the mind-body connection.
Each and every human being experiences symptoms of real physical problems that are made worse by our emotions, our attitudes, our expectations, and so on. To ignore these factors is tantamount to ignoring ourselves.
On the other hand, it is completely understandable why some MS patients fall into the trap of ignoring the mind-body connection.
After all, many doctors dismiss people with MS as "it's all in their head." These doctors go to the extreme, ignoring the "body" part of the mind-body connection. And they cause utmost distress to MS patients, as a result. The MS patient is placed into a position where she must fight -- and fight darn hard -- to make doctors look seriously at her body. "it is NOT in my head, it is in my BODY." Therefore, MS patients are vulnerable to traveling in the opposite extreme, ignoring the "mind" part of the mind-body connection.
Quix, I think you are really smart to "have considered that somehow this is a psychological problem." The quality of life usually depends upon the holistic approach.
Even if you were able to draw a Map of an existing spinal lesion, with dotted lines drawn straight to your bladder, nicely illustrated and suitable for framing -- I still think you're smart to consider the "mind" half of the equation WHILE you continue to explore physical solutions.
(And I know how fond you are of Lesion Maps.)
I'm very interested if you explored the option I mentioned, above, regarding the posterior tibial nerve stimulation (PTNS) or neuromodulation?
I'm still undiagnosed, myself. But I am trying to keep in mind all possible treatment options for my progressively worse symptoms, in preparation for the day when I learn the name of my dastardly disease.
Just saw your response, regarding neuromodulation. Our posts crossed paths. Did you feel them bump each other, due to post ataxia?