Is it just me or does anyone else forget to mention important things to the doctor

[shellywill]

I have been writing things down but then I forgot my note to take with me to my Rheumy. I did not mention that I have bowel problems and problems when I urinate. About four or five months ago I went to a Colon Rectal Specialist and talked to her about my bowel problems. She did an exam but found nothing and said that I must have weak muscles down there. Saying that makes me feel like a small child, lol. Anyway, When I urinate, I feel like I never fully empty my bladder. I told my doctor about this as well as my Gyno. My Gyno had a urine test or culture and that came back negative for infection. my doctor seemed to dismiss this along with many other things as I've mentioned before.
Please if anyone has a comment I would appreciate it very much.
Shelly

[Toomanyadvil]

Came across this post running a search for those mentioning Interstitial Cystitis.  
Just a quick note as Interstitial Cystitis(IC) is a very complex disease of the bladder with no known cure or successful treatment that improves all symptoms in everyone.  
The whole diagnostic defenition for IC is that presence of any bacteria is non-existant. This is why it is incurable and chronic.
If there was the discovery of a new bacteria in regards to IC,  you can bet all IC patients would be knocking down the door of there Urologists because IC would then be curable.  
First they would have to identify this 'new' bacteria, then perform extensive research and testing in order to prove there theory, finding this 'becteria' in a very large number of the bladders of those with IC.
Like I said IC is defined as having a lack of bacterial infection causing the symptoms.
Tests and research shows that ant-biotics have had no effect one way or the other on an IC bladder.

I apologize for hijacking your thread all.  But IC is a very unknown disease to the public and even to many DR's.  False information floating around does those of us with the disease a huge injustice. Especially that they have found some new bacteria, which then makes it curable. It just causes false hope and causes further denial that you have a chronic incurable disease which effects every aspect of your life.
Same with MS myths.

Maybe you found information on Bacterial Cystitis.  These cystitis ar not the same as one is caused from an already known becteria (coliform bacteria: brought from the bowel into the urethra up to the bladder)  and is curabe and not chronic.

Glad I did get a chance to write this as IC is very mis-understood and mis-diagnosed. The more people who know about what IC is, the closer those if us with IC come to recieving understanding and proper treatment.

Thank you all for listening, again sorry to hi-jack your thread. I know I would appriciate someone with MS correcting misinformation that I was given.  

[shellywill]

Yes, I do need a referal, unfortunately. I have a problem getting them too, at least lately. I have insurance through welfare because when my partner and I planned on having a baby through invetro. I became ill and I could not be on her insurance because she works for the government and I have had medical problems since. So...my doctor was thinking that my symptoms are psychological but then he decided to send me to a Rheumy and then a Neuro.Now that I saw the Rheumy I am afraid that my doc will change his mind about the Neuro, even though the Rheumy found that I have a Tremor. And as if things couldn't get even more messed up, my dear mother, after months of hearing me complain about the symptoms I have been experiencing and telling me that it is probably anxiety, she informed me today that Parkensons Disease runs in my family on her side. My grandmother's sister had it. On top of everything I have to call my doctor and tell him that .
Hang in,
Shelly

[wishforchange]

I always find that whilst waiting to see your doctor, and they always do keep you waiting, is a great time to write your list of what you want to say and ask.  Keep it in your hand until you go in.  Sometimes I've even just handed over the list to the doctor, gives them a framework for the consultation.  Also stops them just talking at you as you are obliging them to respond to your concerns.
Regarding the bladder and bowel problem.  I don't know what age you are but weak muscles in pelvis are more associated with incontinence than retention.  Retention may be a neruological issue, the nerves that open the sphincter to let you empty your bladder may be malfunctioning.  This is a condition I have, and it has nothing to do with muscle strength.  These nerves are also for the most part not under voluntary control.  Essentially if your bladder is healthy, although maybe inflamed from chronic infection, this is a neurological rather than urological issue.  You need to be referred to a uro-neurologist.  There are not too many of them about, but medicine is catching up with this area of health.  You may need to be taught how to self cathterize.  For me this changed my life for the better, after years of infections and bladder pain from chronic retention I now have a bladder which is emptied by me whenever it is playing up.  Takes seconds to put the catheter in and clear out the retained urine.  Don't be fobbed off by being told there is nothing wrong.  Some of the top professors in the world are researching this condition and it is not some psychological issue causing it.  In the past people were  told this and had to suffer years of chronic retention, infections and kidney damage.  Now you will be taken seriously, but only if you find the right consultant.  Regarding being told you do not have an infection, take this with a pinch of salt too.  Tests for infections are limited to the bacteria scientists recognize.  People with interstitial cystis for example, often test negative for infections.  Yet is is now being considered that infection is present, but just not showing on the tests.  Any test is only as good as the person who invented it and those who interpret it.  Don't be dismissed.  And if you want to strengthen your pelvic muscles, you can just squeeze them for several minutes every day, or go to classes such as Pilates.  Hope you find good doctors and keep your lists handy to tell them all you need to say.  Personally I never walk into a doctor's surgery without a list, and I get the impression they actually like it. Keep confident.

[shellywill]

sorry about that, what I wanted to say is thank you for letting me know that I am not alone. It is good that you have your husbands support the way that you do.
Thanks, Shelly

[AMO]

hi shelly,

so sorry ou have no tbeen feeling well.
About the forgetting, yes, So   i make sure to either havvve my hubby remind me     when we are righ thtere to bring up the mostly important thingss i want to discuss..
I typicall make a note list to myself of what to say, yeah i hold it right in my hand and still forget, HA!

GOod to ohear you have not infection. IT sounds like you need to see a urologist. They could do an ultrasound to see if your are in retention. A cytoscopy looks inside your bladder to see if anything structurely is wrong.Then they might say a urodynamics test. That  test evaluated how your plumbing (muscless and all) are working.

what kind of insurance yo have? Do you have to have a referal?
i understand how difficult it is to have   to keep fighting to be heard, but hang in there , amo

[Tahiri_Veila]

Trust me you are not the only one.  I recently went to a neuro and forgot about everything as soon as I walked into the office.  That is why I have recently been working on a timeline to give to my doctor.  It is posted on this site. Try doing that and take it next time.  I am going to and hopefully it will help my doctor.  Trust me you are not alone.
  Tahiri