Posted by okydoky on November 3, 2008, at 23:50:37
In reply to Re: Sigismund + others, Thanks » okydoky, posted by JadeKelly on November 3, 2008, at 21:16:43
> Just a little amateur brainstorming...hope you don't mind, and hope you get answers you're looking for!!!Of course I don't mind. It is kind of you to take an interest. I hope I am not boring you to death. Please if anyone is not interested in this subject do not read on.
>> Oky,
> You are much better educated in these areas than I am, but if you don't mind:
In my experience NO ONE is!!
> 1. Do you have neurogenic bladder, or it just becomes a problem when taking certain meds?
Neurogenic. Meds and foods cause increased symptoms called "flares"
> 2. I'm assuming you have seen a reputable urologist/gyn and had some imaging done?I have been to almost every Uro in Pittsburgh that treats* I.C.,had two biopsies and three bio distensions and a pain block. I saw a "specialist" at "The University of Pennsylvania"(Dr Phillip Hanno) , consulted with a leading research Dr ( Dr. Chancellor) in Pittsburgh that does research in all the related areas , who suggested my only hope was to move to a large city where I would have access to better providers at renowned institutions, two or three years ago I received botox injections into my bladder at the University of Miami as part of a research protocol. I dropped out after the first course as I was unfortunate in that I gained no relief from it. It is a very successful treatment. I travel 1hour 20min. to see a doctor now. Most uros just do not want to be bothered treating what is considered an "orphan" disease and find it difficult to handle this type of patient, needy I would say as compared to the usual take this or I'll take that out and see you in several months:-( (see the second link I provide)
*treatment generally means using one or two modalities and usually no pain relief. IF the docs pet treatment does not work for you too bad!!! He can make his money elsewhere without all the drama!!!
>
> 3. Do you take anything that could act as a diuretic, or maybe check that as a s/e in future meds?No.
>
> 4. Possible that drugs that effect nerves in that area are culprit?Anything is possible. I became ill during a three year stint with high dose perphenazine/cognetin and got better for several years when I stopped taking it. It came back full force. Perhaps some nerve damage had been done by the constant insult of the medication! At this future time I also had many infections which also could have caused nerve damage. There were many variables that could have contributed to the many theoretical etiological causes at this onset when I was diagnosed.
>
> 5. Would good urologist/Gyn know which drugs, or their properties, may be capable of causing your problem? Could he/she look at info page re: new meds before you take them?
No not at all. In fact it seems apparent that the disease "name" only suggests a cluster of symptoms so some people have no problem taking drugs I am unable to take.> 6. Is your estrogen level low, or is it possible that certain drugs lower it? I've seen that as s/e that a drug can lower estrogen, which in turn could cause bladder problems.
I have thought about this before. I was slightly low in estrogen several years ago and used a naturopathic cream. No one including an endocrinologist would listen to my thoughts on the subject. I do not believe it is the cause but a contributing factor. I have been so unfocused between the depression and the I.C., money worries and forgetfulness I had meant to follow this line of reasoning up with a naturopath, do saliva testing again.
If you are interested I find the following article informative and easy read about the disease itself and all it's possible etiologies including natural ways to treat them:
http://findarticles.com/p/articles/mi_m0ISW/is_2001_Feb/ai_70777335The following link is one I sent to my family several times they got on my back:
http://query.nytimes.com/gst/fullpage.html?res=990CE5D61F31F936A15752C0A963958260
Kind of you to show an interest. Sorry if I provided more information than you had in mind. I am sure this belongs on another site, actually another website altogether, there are two.
With gratitude hoping things are going well for you,
oky
poster:okydoky
thread:860366
URL: http://www.dr-bob.org/babble/20081027/msgs/860683.html