Niad
06-13-2009, 09:00 AM
Hi, everyone
My neurologist has scheduled a lumbar puncture to check for MS.
I am just wondering if a lumbar puncture is an outpatient or inpatient procedure as mine is scheduled as an inpatient procedure and I just wondered why that may be?
Is it perhaps because they want to do more tests on me or because I live a bit away from the hospital and will have to travel for about an hour or so to get there and the same to get back home?
I would much appreciate any suggestions you could give.
Many thanks
Kind regards
Niad
My neurologist has scheduled a lumbar puncture to check for MS.
I am just wondering if a lumbar puncture is an outpatient or inpatient procedure as mine is scheduled as an inpatient procedure and I just wondered why that may be?
Is it perhaps because they want to do more tests on me or because I live a bit away from the hospital and will have to travel for about an hour or so to get there and the same to get back home?
I would much appreciate any suggestions you could give.
Many thanks
Kind regards
Niad
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Snoopy61
06-13-2009, 11:17 AM
Typically the Lumbar Puncture (LP) is an outpatient procedure.
I'm not sure why you would be having it done as inpatient. If possible contact your doctors office for an explaination so you will know what to expect at the hospital.
I'm not sure why you would be having it done as inpatient. If possible contact your doctors office for an explaination so you will know what to expect at the hospital.
MSNik
06-13-2009, 08:53 PM
Hi Niad. You and I had this same conversation in a post you started on May
13th, I went back and found it, so Im not going to repeat myself- but go read your old post and if you still have specific questions, ask them!
Its never an inpatient test. Why dont you ask the doctor why he is scheduling you inpatient...the test takes 20 minutes- tops! And, you are awake the whole time...Also, a lumbar puncture isnt going to tell you if you have MS or not. ITs not a conclusive test for MS....what it will do is rule out infections, and other things which present like MS...and it MIGHT show Obands, which point towards MS...but not everyone with OBands has MS and not everyone without them is negative. I dont have OBands- but I do have MS.
Keep us postd and let us know how we can help...but why dont you call your doctors office and get an answer as to why this is inpatient? Thats something Im sure we would all like to know!
Hugs and be strong...its over quick.
Nikki
13th, I went back and found it, so Im not going to repeat myself- but go read your old post and if you still have specific questions, ask them!
Its never an inpatient test. Why dont you ask the doctor why he is scheduling you inpatient...the test takes 20 minutes- tops! And, you are awake the whole time...Also, a lumbar puncture isnt going to tell you if you have MS or not. ITs not a conclusive test for MS....what it will do is rule out infections, and other things which present like MS...and it MIGHT show Obands, which point towards MS...but not everyone with OBands has MS and not everyone without them is negative. I dont have OBands- but I do have MS.
Keep us postd and let us know how we can help...but why dont you call your doctors office and get an answer as to why this is inpatient? Thats something Im sure we would all like to know!
Hugs and be strong...its over quick.
Nikki
MSJayhawk
06-13-2009, 10:13 PM
My first LP was in 1982. In those bygone years the LP was an inpatient procedure. I should think that yours should now be an out patient. You might ask why they have scheduled an inpatient. :angel:
Niad
06-14-2009, 09:50 AM
Hi, Snoopy61, Nikki and MSJayhawk. :)
Thanks for all of your helpful and informative posts. It's much appreciated.
Snoopy61, I'm not sure either as to why it's scheduled as inpatient and will need to ask them why as my neurologist said it was daycase.
Nikki, I am going to ask the hospital and see what they say. I don't like the idea of being awake though! I'd much rather be asleep. Though it doesn't say if I have or have not got MS, from what you describe it still sounds like a slightly useful test. That is a curious thing - how do they know if we have MS if on tests we don't show any of the typical signs for MS? Do they guess from the medical history and symptoms? That to would not be ideally accurate either.
MSJayhawk, I will contact them and see what they say. It may be because I live miles away and it isn't suitable to sit upright for hours travelling in a car. That could be perhaps why but I'm only guessing so it may not be.
I'll let you all know what they say - the reasons why it is inpatient - when I contact them.
I am a little nervous about staying in hospital overnight as I have never done it before, only had daycase where I have the procedure done on the same day and also go home on the same day. I would think it would be quite noisy at night as people would be walking around, etc. Do they turn the lights off? What is staying in hospital overnight like? I would feel probably better if I knew what to expect at night.
Many thanks and kind regards to you all. :)
Niad
Thanks for all of your helpful and informative posts. It's much appreciated.
Snoopy61, I'm not sure either as to why it's scheduled as inpatient and will need to ask them why as my neurologist said it was daycase.
Nikki, I am going to ask the hospital and see what they say. I don't like the idea of being awake though! I'd much rather be asleep. Though it doesn't say if I have or have not got MS, from what you describe it still sounds like a slightly useful test. That is a curious thing - how do they know if we have MS if on tests we don't show any of the typical signs for MS? Do they guess from the medical history and symptoms? That to would not be ideally accurate either.
MSJayhawk, I will contact them and see what they say. It may be because I live miles away and it isn't suitable to sit upright for hours travelling in a car. That could be perhaps why but I'm only guessing so it may not be.
I'll let you all know what they say - the reasons why it is inpatient - when I contact them.
I am a little nervous about staying in hospital overnight as I have never done it before, only had daycase where I have the procedure done on the same day and also go home on the same day. I would think it would be quite noisy at night as people would be walking around, etc. Do they turn the lights off? What is staying in hospital overnight like? I would feel probably better if I knew what to expect at night.
Many thanks and kind regards to you all. :)
Niad
MSJayhawk
06-14-2009, 10:04 AM
MSJayhawk, I will contact them and see what they say. It may be because I live miles away and it isn't suitable to sit upright for hours travelling in a car. That could be perhaps why but I'm only guessing so it may not be.
Many thanks and kind regards to you all. :)
Niad
Ahhhh! Then I would readily understand the need! I say, go for it. Relax and most of your time will be watching TV or reading afterward! :angel:
Many thanks and kind regards to you all. :)
Niad
Ahhhh! Then I would readily understand the need! I say, go for it. Relax and most of your time will be watching TV or reading afterward! :angel:
MSNik
06-14-2009, 10:59 AM
Though it doesn't say if I have or have not got MS, from what you describe it still sounds like a slightly useful test. That is a curious thing - how do they know if we have MS if on tests we don't show any of the typical signs for MS? Do they guess from the medical history and symptoms? That to would not be ideally accurate either.
The test is useful, because it rules out other things....With MS, there is no test to confirm that you have it. No blood test, no radiographic test, nothing really. MS is diagnosed by ruling out everything else, and yes- from a history and symtoms. Are you familiar with the McDonald Criteria? Its posted several places, but at the very top of the MS Healthboards page, is a thread, which will also give you more information. This is what Doctors look for, before making an MS diagnosis. There are so many illnesses which present the same way, its not always easy.
Wishing you a good experience with your LP, and remember, the anxiety of having it done is so much worse then the actual test. I dont know of anyone who has ever been asleep for the test, so let us know what your doctor says when you talk to him!
Nikki
The test is useful, because it rules out other things....With MS, there is no test to confirm that you have it. No blood test, no radiographic test, nothing really. MS is diagnosed by ruling out everything else, and yes- from a history and symtoms. Are you familiar with the McDonald Criteria? Its posted several places, but at the very top of the MS Healthboards page, is a thread, which will also give you more information. This is what Doctors look for, before making an MS diagnosis. There are so many illnesses which present the same way, its not always easy.
Wishing you a good experience with your LP, and remember, the anxiety of having it done is so much worse then the actual test. I dont know of anyone who has ever been asleep for the test, so let us know what your doctor says when you talk to him!
Nikki
Snoopy61
06-14-2009, 03:58 PM
That is a curious thing - how do they know if we have MS if on tests we don't show any of the typical signs for MS? Do they guess from the medical history and symptoms? That to would not be ideally accurate either.
Niad
MS is still a clinical diagnosis, more likely than not based on clinical observation, testing and symptoms.
There is no single test that can, by it's self, give a definte diagnosis. Each test that is done can give clues as to what is going on rather it's MS or something else.
The lumbar Puncture is just another test in the process. With MS some will have a positive LP that shows O-Bands. Those O-bands can give a diagnosis of MS but not everyone with MS will have O-Bands.
I was dx'd because of a positve LP. Had my LP not been positive I would not have gotten a diagnosis at that time, every other test I had was inconclusive/negative.
I have read some of your posts and the urinary issues made me wonder if you were dealing with a neurogenic bladder. A Neurogenic bladder can be related to MS as can retention.
Niad
MS is still a clinical diagnosis, more likely than not based on clinical observation, testing and symptoms.
There is no single test that can, by it's self, give a definte diagnosis. Each test that is done can give clues as to what is going on rather it's MS or something else.
The lumbar Puncture is just another test in the process. With MS some will have a positive LP that shows O-Bands. Those O-bands can give a diagnosis of MS but not everyone with MS will have O-Bands.
I was dx'd because of a positve LP. Had my LP not been positive I would not have gotten a diagnosis at that time, every other test I had was inconclusive/negative.
I have read some of your posts and the urinary issues made me wonder if you were dealing with a neurogenic bladder. A Neurogenic bladder can be related to MS as can retention.
Niad
06-15-2009, 03:23 PM
Hi, MSJayhawk, Nikki and Snoopy61.
Thanks for all of your helpful and informative replies.
I contacted the hospital and they said that it is actually a daycase where I have it done and then stay lying down for a couple of hours but go home on the same day. They said that they call it an inpatient appointment because I am going into hospital for treatment. Though I thought inpatient meant staying in hospital for at least overnight?
MSJayhawk, I think I'll need to bring some of my own entertainment as whenever I've ever had an outpatient/daycase they never had anything to do! Which for me is extremely boring so I think I'll bring a few magazines and things like that... :)
Nikki, it sounds like it is worth having then as long as it doesn't cause any nasty side effects or complications as it at least rules out other things. I'll check out the McDonald Criteria. Hopefully it'll be over quickly and swiftly. I contacted the hospital and spoke to one of the ladies there and they said that I cannot have any sedation or be put to sleep because they want me to co-operate. I hope it isn't too nasty.
Snoopy61, It sounds to me like MS is quite difficult to diagnose but the thing I wonder is can they actually call it MS and it may not actually be that at all, seeing as there is no definite tests for it? I have heard and read that they compare O-bands with both a blood test and lumbar puncture. Do they do these both at the same time while in hospital? Also, I too wonder if I may be dealing with a neurogenic bladder as it isn't getting better, only worse. I used to only have 140ccs/mls of residuel urine, now it has got worse and is 300ccs/mls. None of my doctors or spinal doctors know why I have the bladder problem and don't know how to treat it and have said there is nothing they can do. They have made me do self cathing but I have decided it is way too painful and hurts my back as well so I just cannot do it now. I do wonder if there are more convenient treatments for retention. Self catheterising is too inconvenient for me and does not really help completely as I still have to reduce fluid intake which I don't feel is good for me as I am getting dehydrated but cannot also cope with drinking anymore due to toileting frequency. It kind of goes round in circles and never stops. The doctors I've seen just don't seem to understand the severity of my symptoms and how depressing it gets me down as I cannot sleep at night and results in lethargy and tiredness. I don't know what to do and do not want to carry on sefl cathing all my life. I cannot do it. It is too much and too painful as I am extremely sensitive, even numbing me doesn't work as after it wears off I'm still sore from having it done.
A specialist nurse is actually performing the lumbar puncture which I find unusual as it is usually a neurologist or anaesthetist that does them but the lady said that neurologists rarely do them now.
Many thanks for all of your helpful replies and will let you know how I get on with my lumbar puncture.
Kind regards
Niad
Thanks for all of your helpful and informative replies.
I contacted the hospital and they said that it is actually a daycase where I have it done and then stay lying down for a couple of hours but go home on the same day. They said that they call it an inpatient appointment because I am going into hospital for treatment. Though I thought inpatient meant staying in hospital for at least overnight?
MSJayhawk, I think I'll need to bring some of my own entertainment as whenever I've ever had an outpatient/daycase they never had anything to do! Which for me is extremely boring so I think I'll bring a few magazines and things like that... :)
Nikki, it sounds like it is worth having then as long as it doesn't cause any nasty side effects or complications as it at least rules out other things. I'll check out the McDonald Criteria. Hopefully it'll be over quickly and swiftly. I contacted the hospital and spoke to one of the ladies there and they said that I cannot have any sedation or be put to sleep because they want me to co-operate. I hope it isn't too nasty.
Snoopy61, It sounds to me like MS is quite difficult to diagnose but the thing I wonder is can they actually call it MS and it may not actually be that at all, seeing as there is no definite tests for it? I have heard and read that they compare O-bands with both a blood test and lumbar puncture. Do they do these both at the same time while in hospital? Also, I too wonder if I may be dealing with a neurogenic bladder as it isn't getting better, only worse. I used to only have 140ccs/mls of residuel urine, now it has got worse and is 300ccs/mls. None of my doctors or spinal doctors know why I have the bladder problem and don't know how to treat it and have said there is nothing they can do. They have made me do self cathing but I have decided it is way too painful and hurts my back as well so I just cannot do it now. I do wonder if there are more convenient treatments for retention. Self catheterising is too inconvenient for me and does not really help completely as I still have to reduce fluid intake which I don't feel is good for me as I am getting dehydrated but cannot also cope with drinking anymore due to toileting frequency. It kind of goes round in circles and never stops. The doctors I've seen just don't seem to understand the severity of my symptoms and how depressing it gets me down as I cannot sleep at night and results in lethargy and tiredness. I don't know what to do and do not want to carry on sefl cathing all my life. I cannot do it. It is too much and too painful as I am extremely sensitive, even numbing me doesn't work as after it wears off I'm still sore from having it done.
A specialist nurse is actually performing the lumbar puncture which I find unusual as it is usually a neurologist or anaesthetist that does them but the lady said that neurologists rarely do them now.
Many thanks for all of your helpful replies and will let you know how I get on with my lumbar puncture.
Kind regards
Niad
Snoopy61
06-15-2009, 05:27 PM
Snoopy61, It sounds to me like MS is quite difficult to diagnose but the thing I wonder is can they actually call it MS and it may not actually be that at all, seeing as there is no definite tests for it? I have heard and read that they compare O-bands with both a blood test and lumbar puncture. Do they do these both at the same time while in hospital? Also, I too wonder if I may be dealing with a neurogenic bladder as it isn't getting better, only worse. I used to only have 140ccs/mls of residuel urine, now it has got worse and is 300ccs/mls. None of my doctors or spinal doctors know why I have the bladder problem and don't know how to treat it and have said there is nothing they can do. They have made me do self cathing but I have decided it is way too painful and hurts my back as well so I just cannot do it now. I do wonder if there are more convenient treatments for retention. Self catheterising is too inconvenient for me and does not really help completely as I still have to reduce fluid intake which I don't feel is good for me as I am getting dehydrated but cannot also cope with drinking anymore due to toileting frequency. It kind of goes round in circles and never stops. The doctors I've seen just don't seem to understand the severity of my symptoms and how depressing it gets me down as I cannot sleep at night and results in lethargy and tiredness. I don't know what to do and do not want to carry on sefl cathing all my life. I cannot do it. It is too much and too painful as I am extremely sensitive, even numbing me doesn't work as after it wears off I'm still sore from having it done.
A specialist nurse is actually performing the lumbar puncture which I find unusual as it is usually a neurologist or anaesthetist that does them but the lady said that neurologists rarely do them now.
Hello, Niad.
Diagnosing can be quick, slow and everything in between. It depends on the neuro and testing. I had my diagnosis 3 months after testing began - I was diagnosed based on the positive LP, neuro exams and symptoms...mine was a clinical diagnosis.
I'm not sure how common it is to get diagnosed with MS and then undiagnosed. I do know it happens.
In my case my diagnosis will not change...unfortunately. However, I did have a neuro try to re-diagnose mine as something worse...it didn't happen.
I am sorry self cathing is so painful for you. When I was 4 years old until about the age of 11 I saw a urologist on a regular basis and cathing was done everytime - my memories are of pain from the cathing. I had retention problems and not a single urologist knew why. I spent the majority of my childhood on antibiotics for Urinary Tract Infections (UTIs).
Since I have had MS symptoms since childhood that is just one more symptom that makes me think MS, for me, started early.
I hate to see you restirct your fluid intake, it's just not good and I know you are aware of that.
It's not uncommon for those with MS to self-cath :(
Have you had any other testing for MS such as Brain and/or spine MRI?
If you have not had a spine MRI I would definitely speak to your doctor about one. A cervical spine MRI, if it show lesions, will explain your urinary problems. Also, a MRI of the spine could show disc herniations that might be impringing or compressing on a nerve which would also explain urinary problems.
I hope your LP goes well and that answers come soon.
A specialist nurse is actually performing the lumbar puncture which I find unusual as it is usually a neurologist or anaesthetist that does them but the lady said that neurologists rarely do them now.
Hello, Niad.
Diagnosing can be quick, slow and everything in between. It depends on the neuro and testing. I had my diagnosis 3 months after testing began - I was diagnosed based on the positive LP, neuro exams and symptoms...mine was a clinical diagnosis.
I'm not sure how common it is to get diagnosed with MS and then undiagnosed. I do know it happens.
In my case my diagnosis will not change...unfortunately. However, I did have a neuro try to re-diagnose mine as something worse...it didn't happen.
I am sorry self cathing is so painful for you. When I was 4 years old until about the age of 11 I saw a urologist on a regular basis and cathing was done everytime - my memories are of pain from the cathing. I had retention problems and not a single urologist knew why. I spent the majority of my childhood on antibiotics for Urinary Tract Infections (UTIs).
Since I have had MS symptoms since childhood that is just one more symptom that makes me think MS, for me, started early.
I hate to see you restirct your fluid intake, it's just not good and I know you are aware of that.
It's not uncommon for those with MS to self-cath :(
Have you had any other testing for MS such as Brain and/or spine MRI?
If you have not had a spine MRI I would definitely speak to your doctor about one. A cervical spine MRI, if it show lesions, will explain your urinary problems. Also, a MRI of the spine could show disc herniations that might be impringing or compressing on a nerve which would also explain urinary problems.
I hope your LP goes well and that answers come soon.
MSNik
06-15-2009, 07:27 PM
Hi Niad. Kind of figured it didnt sound right that they were keeping you over night, and not surprised to hear that they want you awake and oriented, either.
And, no- its not uncommon for a nurse practioner or specialist to do this test, more and more of them are doing it these days..relax and let that happen.
The test itself, here is what you can expect: You will go into the room and this is important. Dont look around. You dont want to see anything on the instrument tray! If you dont look, you wont know what is going on. Tell them you are nervous, its okay to be. One of two ways the test is done. Either laying down on your side, with your knees drawn up in a fetal position, or on your stomache, kind of standing, but bent over the table....different people do it different ways.
They will inject novacaine into your spine...its a needle, and a pinch, but over very quickly....this is the worst of it! Its not bad, I promise. Once the novacaine takes affect, they will insert a needle into your spine, between your discs- how quickly they can draw out the fluid depends on the individual, sometimes it takes ten minutes, sometimes it takes 3 minutes!! Its important to drink lots of fluids and caffeine the day before and the morning of the test because the more hydrated you are, the better and easier it will be. caffeine wards off the headache that youll hear about.
Withdrawing spinal fluid causes an imblance- and this can make you very dizzy...its SUPER important to stay flat on your back for a minimum of an hour, and then for the rest of the day. The longer you can stay there, flat, the better off youll be in the long run. SO, be prepared to lay flat on your back, only getting up to pee- for most of the day. its okay to go home in a car, but recline the seat and stay flat if you can.
The following day, youll be slightly soar, but not in pain....if all goes well, and you dont develpe the headache ( I never have) youll be up and around your house the next day...some people even go to work, if its not a strenuous job.
Youre going to be fine. I hate to say it, but its a common procedure and the anxiety of the test is SO MUCH WORSE then the actual test....the whole thing will be over in less then half an hour.
Prayers are with you....
Nikki
And, no- its not uncommon for a nurse practioner or specialist to do this test, more and more of them are doing it these days..relax and let that happen.
The test itself, here is what you can expect: You will go into the room and this is important. Dont look around. You dont want to see anything on the instrument tray! If you dont look, you wont know what is going on. Tell them you are nervous, its okay to be. One of two ways the test is done. Either laying down on your side, with your knees drawn up in a fetal position, or on your stomache, kind of standing, but bent over the table....different people do it different ways.
They will inject novacaine into your spine...its a needle, and a pinch, but over very quickly....this is the worst of it! Its not bad, I promise. Once the novacaine takes affect, they will insert a needle into your spine, between your discs- how quickly they can draw out the fluid depends on the individual, sometimes it takes ten minutes, sometimes it takes 3 minutes!! Its important to drink lots of fluids and caffeine the day before and the morning of the test because the more hydrated you are, the better and easier it will be. caffeine wards off the headache that youll hear about.
Withdrawing spinal fluid causes an imblance- and this can make you very dizzy...its SUPER important to stay flat on your back for a minimum of an hour, and then for the rest of the day. The longer you can stay there, flat, the better off youll be in the long run. SO, be prepared to lay flat on your back, only getting up to pee- for most of the day. its okay to go home in a car, but recline the seat and stay flat if you can.
The following day, youll be slightly soar, but not in pain....if all goes well, and you dont develpe the headache ( I never have) youll be up and around your house the next day...some people even go to work, if its not a strenuous job.
Youre going to be fine. I hate to say it, but its a common procedure and the anxiety of the test is SO MUCH WORSE then the actual test....the whole thing will be over in less then half an hour.
Prayers are with you....
Nikki
Niad
06-16-2009, 08:32 AM
Hi, Snoopy61 and Nikki :)
Thanks for both your helpful and informative replies.
Snoopy61, My neurologist didn't say how quick it would take for the results to come back so I'm not sure how long it'll be but I'll let you all know the results when they do come back. I also had blood tests for vitamin B12 deficiency and other things but have not heard anything and it's been about a month or so now. Does that mean they are ok? I too have heard and read that people first diagnosed with MS may then get told they don't have it. Confusing as there is no definite answer which is something that could prove tricky in making a firm diagnosis. Thank goodness that neurologist didn't diagnose it as something worse. Though I also feel sorry for people who have to deal with MS as it, from what I've read, is a varying condition and can be quite difficult to manage as there is nothing that can cure it or make it better as far as I know but I could be wrong. There may be new procedures, etc out there that have not been mentioned yet. Do you mind me asking why the urologist cathed you everytime? It sounds like he/she was trying to perhaps obtain a urine sample via catheterisation but I'm not sure as I've heard they sometimes do this but they have never done that with me , only clean catch specimin where I collect one the normal way. I was told by a load of doctors and also my urogynaecologist that cathing, even self cathing, that it isn't painful and that it is easy! It sounds easier than it really is to do it physically. I just cannot bring myself to do it knowing the pain and horrible feeling it makes when I do it, even with numbing it doesn't make it any better. Personally I think because these doctors have never had to do it on themselves they just can say any old thing as they don't really know what their patients are going through pain-wise. They are guessing it isn't painful when in actual fact if you tell them they still insist you carry out a painful procedure such as cathing daily! It is horrible and I don't feel like they want to or are listening to me and taking into account the trauma self catheterising is having on me emotionally and mentally. They don't know why I have retention either. They are only really guessing a lot of the time which is a waste of time as it is not an accurate answer as to what is causing the retention. All patients deserve an accurate answer, or as accurate as possible, not one that is thought up. I never had urinary/bladder problems as a child but am now plagued by urinary tract infections quite often due to my urinary retention which they are not really treating, only by self cathing, which I have decided to give up as it is just too much for me. I cannot cope with it. I have heard that sometimes we can be born with things and not show any symptoms at birth or yound age until later on in life when symptoms start to appear. I never showed or had any health problems like this until I was 17 after a virus struck me quite badly, giving me pain from the top of my head, neck and all the way down to the tips of my feet. Makes me think I may have had a milder form of meningitis as I had sensitivity to light and was being sick a lot. I was also delirious and hallucinating with a high temperature which made my mom worried so she decided to keep me in her bed to keep an eye on me. Unfortunately restricting my fluid intake is the only way I can manage my bladder problem as nothing else I try works, even meds which made me worse. It is unhealthy but I don't really know what to do to control my symptoms. This is the only thing that relieves them, unless I get a proper catheter put in which my consultant has refused and told me to get on with self cathing or suffer basically and Ive decided I am not doing self cathing so it looks like the only way to relieve my symptoms is restricting my fluid intake. I found that drinking about 3 cups a day is ok and I can manage by doing this but also know it is not ideal. Perhaps I should mention this to my consultant and he will get a move on in trying to help me faster rather than making me wait for ages just for a follow-up? Seems like a good plan... I have had an MRI of my brain, neck and upper back on 2 January 2009 and perhaps could do with an up-to-date MRI of my lower back as I had an MRI of this ages ago in May 2008 before all this trouble with my bladder. Maybe something has changed down there? The MRIs of my head shows nothing abnormal apparently. The MRIs of my neck and upper back show degeneration of my spine. The MRI I had of my lower back showed grade 3 disc degeneration and a schmorls node. The radiologist said this degeneration was unusual for a person of my age (19 at the time, now 21). Though non of the spine surgeons I saw or doctors seemed bothered by it at all! They sort of shrugged it off as 'normal' and discharged me without a reason for this early degeneration. Strange... Still have no idea why I have it or what has caused it.
Nikki, I read on the internet that apparently it isn't a procedure that requires overnight stay, unless maybe something goes wrong, hopefully not. It is also apparently common practice to not sedate or put the patient to sleep but I do wonder what they do for a nervous patient or for children though? Do they not go ahead with it? Just curious on that one. Is the test done in a theatre or another sort of room as I am being admitted to hospital as a daycase but am not sure where they will perform it? I definitely don't want to see anything on the instrument tray! That would certainly make me more nervous and I'd probably decide to make a break for it! I remember when I went into the Emergency theatre (because the other regular theatres were not ready! Bad management probably) for my cystoscopy, before going to sleep, I saw all the equipment like the thing that monitors your heart, breathing stuff (ventilator?), etc, and it made me think twice and I thought about making a break for the door as it was right in front of me - just not go the other way as that was where the theatre itself is! I got drugged though before and I decided I had had it anyway! The drugs they gave me through a needle inmy hand (pre-meds) made me dizzy and the room spun so I would have most likely fell over anyway! I am going to let the nurse know I am nervous and am not keen on needles so hopefully she will then be able to deal with it appropriately. I'm not sure how they are going to position me for the procedure but I think lying down wouldn't be a bad idea just incase I pass out. I have heard that the injection of numbing stuff is probably the worst part of it but perhaps I could ask them to first put some numbing cream on the site of injection so that I don't feel it too much. The fluid part is going to be a complete nightmare and I really don't think I can do it as I've got to travel and I'll be like going to the toilet every 10 minutes! Is there perhaps some sort of way I could avoid this? Perhaps get a catheter in? I am not going to be able to do it otherwise and I'll have to just drink minimal, like I usually do (3 cups) and hope for the best. I think I'll take my time and stay in the hospital lying flat for as long as possible as the journey I reckon is also going to be a complete nightmare as it's a two hour drive from where I live. Hopefully the dreaded spinal headache can be avoided, though I am not sure as I will not be able to drink fluids as recommended due to my severe frequency which is untreated. Hopefully due to it being a common procedure it will be easy for them to perform as they will have done loads of them. I totally agree, the anxiety of the test is much worse as it usually is whenever I get something done as it isn't then as bad as I initially thought! :)
Thanks both for your helpful advice and I'll let you know how it goes. Though I am dreading the fluid part as it is going to be the worst part for me probably so I don't know how they will deal with that as I'll be up and out every 10 minutes. I'll probably drive them and myself mad going up and down like a yo-yo. I will have to limit my intake if they do not insert a catheter as there is just no way I can do it otherwise. I won't be up to it.
Kind regards
Niad
Thanks for both your helpful and informative replies.
Snoopy61, My neurologist didn't say how quick it would take for the results to come back so I'm not sure how long it'll be but I'll let you all know the results when they do come back. I also had blood tests for vitamin B12 deficiency and other things but have not heard anything and it's been about a month or so now. Does that mean they are ok? I too have heard and read that people first diagnosed with MS may then get told they don't have it. Confusing as there is no definite answer which is something that could prove tricky in making a firm diagnosis. Thank goodness that neurologist didn't diagnose it as something worse. Though I also feel sorry for people who have to deal with MS as it, from what I've read, is a varying condition and can be quite difficult to manage as there is nothing that can cure it or make it better as far as I know but I could be wrong. There may be new procedures, etc out there that have not been mentioned yet. Do you mind me asking why the urologist cathed you everytime? It sounds like he/she was trying to perhaps obtain a urine sample via catheterisation but I'm not sure as I've heard they sometimes do this but they have never done that with me , only clean catch specimin where I collect one the normal way. I was told by a load of doctors and also my urogynaecologist that cathing, even self cathing, that it isn't painful and that it is easy! It sounds easier than it really is to do it physically. I just cannot bring myself to do it knowing the pain and horrible feeling it makes when I do it, even with numbing it doesn't make it any better. Personally I think because these doctors have never had to do it on themselves they just can say any old thing as they don't really know what their patients are going through pain-wise. They are guessing it isn't painful when in actual fact if you tell them they still insist you carry out a painful procedure such as cathing daily! It is horrible and I don't feel like they want to or are listening to me and taking into account the trauma self catheterising is having on me emotionally and mentally. They don't know why I have retention either. They are only really guessing a lot of the time which is a waste of time as it is not an accurate answer as to what is causing the retention. All patients deserve an accurate answer, or as accurate as possible, not one that is thought up. I never had urinary/bladder problems as a child but am now plagued by urinary tract infections quite often due to my urinary retention which they are not really treating, only by self cathing, which I have decided to give up as it is just too much for me. I cannot cope with it. I have heard that sometimes we can be born with things and not show any symptoms at birth or yound age until later on in life when symptoms start to appear. I never showed or had any health problems like this until I was 17 after a virus struck me quite badly, giving me pain from the top of my head, neck and all the way down to the tips of my feet. Makes me think I may have had a milder form of meningitis as I had sensitivity to light and was being sick a lot. I was also delirious and hallucinating with a high temperature which made my mom worried so she decided to keep me in her bed to keep an eye on me. Unfortunately restricting my fluid intake is the only way I can manage my bladder problem as nothing else I try works, even meds which made me worse. It is unhealthy but I don't really know what to do to control my symptoms. This is the only thing that relieves them, unless I get a proper catheter put in which my consultant has refused and told me to get on with self cathing or suffer basically and Ive decided I am not doing self cathing so it looks like the only way to relieve my symptoms is restricting my fluid intake. I found that drinking about 3 cups a day is ok and I can manage by doing this but also know it is not ideal. Perhaps I should mention this to my consultant and he will get a move on in trying to help me faster rather than making me wait for ages just for a follow-up? Seems like a good plan... I have had an MRI of my brain, neck and upper back on 2 January 2009 and perhaps could do with an up-to-date MRI of my lower back as I had an MRI of this ages ago in May 2008 before all this trouble with my bladder. Maybe something has changed down there? The MRIs of my head shows nothing abnormal apparently. The MRIs of my neck and upper back show degeneration of my spine. The MRI I had of my lower back showed grade 3 disc degeneration and a schmorls node. The radiologist said this degeneration was unusual for a person of my age (19 at the time, now 21). Though non of the spine surgeons I saw or doctors seemed bothered by it at all! They sort of shrugged it off as 'normal' and discharged me without a reason for this early degeneration. Strange... Still have no idea why I have it or what has caused it.
Nikki, I read on the internet that apparently it isn't a procedure that requires overnight stay, unless maybe something goes wrong, hopefully not. It is also apparently common practice to not sedate or put the patient to sleep but I do wonder what they do for a nervous patient or for children though? Do they not go ahead with it? Just curious on that one. Is the test done in a theatre or another sort of room as I am being admitted to hospital as a daycase but am not sure where they will perform it? I definitely don't want to see anything on the instrument tray! That would certainly make me more nervous and I'd probably decide to make a break for it! I remember when I went into the Emergency theatre (because the other regular theatres were not ready! Bad management probably) for my cystoscopy, before going to sleep, I saw all the equipment like the thing that monitors your heart, breathing stuff (ventilator?), etc, and it made me think twice and I thought about making a break for the door as it was right in front of me - just not go the other way as that was where the theatre itself is! I got drugged though before and I decided I had had it anyway! The drugs they gave me through a needle inmy hand (pre-meds) made me dizzy and the room spun so I would have most likely fell over anyway! I am going to let the nurse know I am nervous and am not keen on needles so hopefully she will then be able to deal with it appropriately. I'm not sure how they are going to position me for the procedure but I think lying down wouldn't be a bad idea just incase I pass out. I have heard that the injection of numbing stuff is probably the worst part of it but perhaps I could ask them to first put some numbing cream on the site of injection so that I don't feel it too much. The fluid part is going to be a complete nightmare and I really don't think I can do it as I've got to travel and I'll be like going to the toilet every 10 minutes! Is there perhaps some sort of way I could avoid this? Perhaps get a catheter in? I am not going to be able to do it otherwise and I'll have to just drink minimal, like I usually do (3 cups) and hope for the best. I think I'll take my time and stay in the hospital lying flat for as long as possible as the journey I reckon is also going to be a complete nightmare as it's a two hour drive from where I live. Hopefully the dreaded spinal headache can be avoided, though I am not sure as I will not be able to drink fluids as recommended due to my severe frequency which is untreated. Hopefully due to it being a common procedure it will be easy for them to perform as they will have done loads of them. I totally agree, the anxiety of the test is much worse as it usually is whenever I get something done as it isn't then as bad as I initially thought! :)
Thanks both for your helpful advice and I'll let you know how it goes. Though I am dreading the fluid part as it is going to be the worst part for me probably so I don't know how they will deal with that as I'll be up and out every 10 minutes. I'll probably drive them and myself mad going up and down like a yo-yo. I will have to limit my intake if they do not insert a catheter as there is just no way I can do it otherwise. I won't be up to it.
Kind regards
Niad
MSNik
06-16-2009, 09:28 AM
Niad, they will probably do it in an outpatient surgi-center type room. Im assuming this is like your outpatient theatre. Its a room, set up for minor procedures, which only has the equiptment in it, which is necessary to that procedure. Unlike the emergency room, it wont be "stocked' with everything for any type of emergency. Youll be fine.
As for the fluids, did they tell you to drink allot the day before? If they do, you can ask them about giving you IV fluids when you get there....I understand with your bladder issues this is a problem, but the norm, is to drink a ton of caffeine the day before, morning of, and day after. You can look into that, by calling where you are having it done. Since you are driving, and can arrive early, maybe they can pump you full of fluids via IV, and then cath you afterwards to get you home. its only for 24 hours that you need to be hydrated.
Im not sure what they will say, but Im guessing you arent the first person to have this issue. even with my MS, I tend to pee my brains out all day long- not always easy, since Im a sales rep, on the road. I know where every clean public toilet is in the state of NJ!!:D
Youre going to be fine. All these are really good questions, and its great that you are asking them, but really- it will be over before you know it and youll be on your way home- where you can recover in your own home.
Hugs
Nikki
As for the fluids, did they tell you to drink allot the day before? If they do, you can ask them about giving you IV fluids when you get there....I understand with your bladder issues this is a problem, but the norm, is to drink a ton of caffeine the day before, morning of, and day after. You can look into that, by calling where you are having it done. Since you are driving, and can arrive early, maybe they can pump you full of fluids via IV, and then cath you afterwards to get you home. its only for 24 hours that you need to be hydrated.
Im not sure what they will say, but Im guessing you arent the first person to have this issue. even with my MS, I tend to pee my brains out all day long- not always easy, since Im a sales rep, on the road. I know where every clean public toilet is in the state of NJ!!:D
Youre going to be fine. All these are really good questions, and its great that you are asking them, but really- it will be over before you know it and youll be on your way home- where you can recover in your own home.
Hugs
Nikki
Niad
06-17-2009, 10:44 AM
Hi, Nikki
I'm not sure as I've never had a lumbar puncture before. They sometimes call them treatment rooms in the UK but I would think it would be maybe a sterile room, similar to theatre, though not sure. I'm not entirely sure what our outpatient theatre is like as I was asleep whenever I've been in. Sometimes I've heard of lumbar punctures being done on the ward or in a neurologist's office but I am being taken in as a daycase onto a ward.
They haven't really told me anything about fluids but I asked and the receptionist said that it is important and to talk to the nurse doing the lumbar puncture but I cannot as she is on two weeks' holiday as of currently and won't be back for some time. The IV fluids idea is a good one. I will request this as it hopefully won't get me rushing to the toilet as much as cups of drink as it will go straight into the body itself, not the bladder. I could never drink caffeine that would be worse than just water! I will pe5rhaps have to get something arranged as I just could not do caffeine. I just know I couldn't. They probably won't really understand though as everytime I say about what I have they just are not sure how to deal with me and cannot suggest anything other at the moment. My mother is taking me so that'll be fine. I'll just have to arrange to have IV fluids though they may refuse it. If they do then I don't know what I will do. Catheterisation is definitely essential for me as I just won't be able to go ahead with the procedure otherwise. I agree, I would not think I am the first person to have this sort of problem either. Hopefully they will have back-up plans for people who have bladder problems. That must be awful if you are on the road as I know how hard travelling can be. I never really do it anymore due to this. I agree, it is good to ask questions about procedures before having them. I want to be fully prepared beforehand. I certainly will be glad of my own bed when I get back as those hospital beds are hard!
Got to go now.
If I have any other questions I'll post them.
I'll keep you updated on how it goes.
Many thanks for your help and support. It's much appreciated.
Kind regards
Niad
I'm not sure as I've never had a lumbar puncture before. They sometimes call them treatment rooms in the UK but I would think it would be maybe a sterile room, similar to theatre, though not sure. I'm not entirely sure what our outpatient theatre is like as I was asleep whenever I've been in. Sometimes I've heard of lumbar punctures being done on the ward or in a neurologist's office but I am being taken in as a daycase onto a ward.
They haven't really told me anything about fluids but I asked and the receptionist said that it is important and to talk to the nurse doing the lumbar puncture but I cannot as she is on two weeks' holiday as of currently and won't be back for some time. The IV fluids idea is a good one. I will request this as it hopefully won't get me rushing to the toilet as much as cups of drink as it will go straight into the body itself, not the bladder. I could never drink caffeine that would be worse than just water! I will pe5rhaps have to get something arranged as I just could not do caffeine. I just know I couldn't. They probably won't really understand though as everytime I say about what I have they just are not sure how to deal with me and cannot suggest anything other at the moment. My mother is taking me so that'll be fine. I'll just have to arrange to have IV fluids though they may refuse it. If they do then I don't know what I will do. Catheterisation is definitely essential for me as I just won't be able to go ahead with the procedure otherwise. I agree, I would not think I am the first person to have this sort of problem either. Hopefully they will have back-up plans for people who have bladder problems. That must be awful if you are on the road as I know how hard travelling can be. I never really do it anymore due to this. I agree, it is good to ask questions about procedures before having them. I want to be fully prepared beforehand. I certainly will be glad of my own bed when I get back as those hospital beds are hard!
Got to go now.
If I have any other questions I'll post them.
I'll keep you updated on how it goes.
Many thanks for your help and support. It's much appreciated.
Kind regards
Niad
MSNik
06-17-2009, 01:37 PM
Niad, Im glad you are finding some stress relief by asking questions here. It feels good to be able to help. Having had several Lumbar Punctures, I can assure you, its not that awful. (But the anxiety is).
Im quite certain they will find a way for you to be both hydrated and not have to worry about your bladder issues. Its not like they want you to drink gallons of the stuff, but they will want your body to have some fluid in it. Keep in mind, its spinal fluid they are pulling out- that isnt affected by how much you drink, or dont drink.
Caffeine is something they advise, to ward off the headache. But caffeine can be administered thru pill form as well. They might give you something to take, to help....even the American Excedrine, commonly used for headaches, contains caffeine- is it availalbe in your part of the world? Nevertheless, something is, when you do get ahold of the nurse, these are the questions youll ask and the answers you will obtain.
Hang in there honey...youre halfway to knowing whats what!
And, keep asking questions- its much better to be prepared.
Hugs
Nikki
Im quite certain they will find a way for you to be both hydrated and not have to worry about your bladder issues. Its not like they want you to drink gallons of the stuff, but they will want your body to have some fluid in it. Keep in mind, its spinal fluid they are pulling out- that isnt affected by how much you drink, or dont drink.
Caffeine is something they advise, to ward off the headache. But caffeine can be administered thru pill form as well. They might give you something to take, to help....even the American Excedrine, commonly used for headaches, contains caffeine- is it availalbe in your part of the world? Nevertheless, something is, when you do get ahold of the nurse, these are the questions youll ask and the answers you will obtain.
Hang in there honey...youre halfway to knowing whats what!
And, keep asking questions- its much better to be prepared.
Hugs
Nikki
Snoopy61
06-17-2009, 10:03 PM
Do you mind me asking why the urologist cathed you everytime? It sounds like he/she was trying to perhaps obtain a urine sample via catheterisation but I'm not sure as I've heard they sometimes do this but they have never done that with me , only clean catch specimin where I collect one the normal way.
Niad
I would be asked to give a 'clean catch' then cathed afterwards. There was always quite a bit of residual urine.
The thought at that time was the urethra was small and cathing would help stretch the urethra and ending the retention. I was even hospitalized once to have the procedure done under a mild sedative. None of that made a difference.
The last urologist I had as a kid said he would not put me through cathing. He said it was painful and obviously not doing anything. He believed in just treating the UTIs when I got them and told my mother not to let any other urologist cath me again. I was very thankful we found him.
To this day I can still have urinary problems and UTIs. My last relapse gave the sensation of an UTI (pain, pressure, frequency). I did initially show a UTI but still had symptoms long after the UTI was gone.
After much testing by my primary care doctor, urologist, gyn and lastly my neuro, it was found to be a MS sensory problem. Not much can be done for that.
Not hearing about your test results could mean your neuro wants all testing done before talking to you about what if anything was found.
I am not going to scold you for not drinking enough although I really want to ;). Please be careful, there are serious downsides to what you are doing but, I understand.
Hopefully you will find your accurate answers soon.
May I ask a favor? When you post on the MS forum could you please break up your paragraphs. It can be difficult for those with MS to read large blocks of print. Some will even pass up reading a post that doesn't have smaller paragraphing because they simply cannot follow.
This would be greatly appreciated and I thank you.
Niad
I would be asked to give a 'clean catch' then cathed afterwards. There was always quite a bit of residual urine.
The thought at that time was the urethra was small and cathing would help stretch the urethra and ending the retention. I was even hospitalized once to have the procedure done under a mild sedative. None of that made a difference.
The last urologist I had as a kid said he would not put me through cathing. He said it was painful and obviously not doing anything. He believed in just treating the UTIs when I got them and told my mother not to let any other urologist cath me again. I was very thankful we found him.
To this day I can still have urinary problems and UTIs. My last relapse gave the sensation of an UTI (pain, pressure, frequency). I did initially show a UTI but still had symptoms long after the UTI was gone.
After much testing by my primary care doctor, urologist, gyn and lastly my neuro, it was found to be a MS sensory problem. Not much can be done for that.
Not hearing about your test results could mean your neuro wants all testing done before talking to you about what if anything was found.
I am not going to scold you for not drinking enough although I really want to ;). Please be careful, there are serious downsides to what you are doing but, I understand.
Hopefully you will find your accurate answers soon.
May I ask a favor? When you post on the MS forum could you please break up your paragraphs. It can be difficult for those with MS to read large blocks of print. Some will even pass up reading a post that doesn't have smaller paragraphing because they simply cannot follow.
This would be greatly appreciated and I thank you.
Niad
06-18-2009, 12:24 PM
Hi, Nikki and Snoopy61.
Thanks for both your helpful and informative messages. :)
I hope they can find a way to keep me hydrated as I don't want them to have to cancel the lumbar puncture just because of my urinary retention problem. I would have thought any form of caffeine, regardless of route of administration would make me dash off to the toilet, even pill form as it's still being digested, etc. I'm not sure if Excedrine is available over here. I would try to avoid caffeine anyway as it irritates my bladder and makes me go more.
The only way they may be able to control the condition I have with my bladder is to cath it and leave it in for the day before lumbar puncture, during and also the day after. I will not drink any extra fluids unless they do this as I know it just won't work and will be a real problem for me otherwise.
The nurse is on two weeks' holiday as of currently so I will not be able to contact her for a bit.
I have heard clean catched can sometimes be contaminated though and be misdiagnosed for infection. Though at least it's painless! I have never had them cath mine.
They intially thought my urethra was narrowed or scarred from the many infections I'd had and did a cystoscopy and urethral dilatation under general anaesthetic but I never noticed any improvements. It still sprays all over in different directions when I go, in fact it may have made it worse!
My urogynaecologist is not really bothered that it hurts me to be cathed and insists I do it and only suggested drug therapy which should not have been given for someone with urinary retention anyway! I refused to take them. I would certainly prefer to see one that actually cares about their patients. You sound like you've got a good one there.
I too get those symptoms you are talking about which are very similar to a UTI even though my samples are sometimes clear! I never really know now when I have got a UTI or when I haven't got one!
Is there any way maybe you could get rid of the 'urge' sensation or other painful bladder feelings though? There must be something they can at least do.
As for my tests, that makes sense what you said.
I also agree with you on the drinking, though I am trying to drink more in the day and less at night, I find it too difficult to control my symptoms if I don't limit my fluid intake. I can get up to go to the toilet up to 6 times in one night!
I have noticed that after I go to the toilet and think I've finished I stand up and then need to go again! There seems to be something going on where it does so much and when I stand up and wipe myself it needs to go again. Quite a bit came out the second time. It's as if it doesn't quite time the emptying right and leaves half in all the time.
Sorry about my large blocks of print. I have tried to break it up as much as I can this time round. :)
Many thanks for both of your great help.
Kind regards
Niad
Thanks for both your helpful and informative messages. :)
I hope they can find a way to keep me hydrated as I don't want them to have to cancel the lumbar puncture just because of my urinary retention problem. I would have thought any form of caffeine, regardless of route of administration would make me dash off to the toilet, even pill form as it's still being digested, etc. I'm not sure if Excedrine is available over here. I would try to avoid caffeine anyway as it irritates my bladder and makes me go more.
The only way they may be able to control the condition I have with my bladder is to cath it and leave it in for the day before lumbar puncture, during and also the day after. I will not drink any extra fluids unless they do this as I know it just won't work and will be a real problem for me otherwise.
The nurse is on two weeks' holiday as of currently so I will not be able to contact her for a bit.
I have heard clean catched can sometimes be contaminated though and be misdiagnosed for infection. Though at least it's painless! I have never had them cath mine.
They intially thought my urethra was narrowed or scarred from the many infections I'd had and did a cystoscopy and urethral dilatation under general anaesthetic but I never noticed any improvements. It still sprays all over in different directions when I go, in fact it may have made it worse!
My urogynaecologist is not really bothered that it hurts me to be cathed and insists I do it and only suggested drug therapy which should not have been given for someone with urinary retention anyway! I refused to take them. I would certainly prefer to see one that actually cares about their patients. You sound like you've got a good one there.
I too get those symptoms you are talking about which are very similar to a UTI even though my samples are sometimes clear! I never really know now when I have got a UTI or when I haven't got one!
Is there any way maybe you could get rid of the 'urge' sensation or other painful bladder feelings though? There must be something they can at least do.
As for my tests, that makes sense what you said.
I also agree with you on the drinking, though I am trying to drink more in the day and less at night, I find it too difficult to control my symptoms if I don't limit my fluid intake. I can get up to go to the toilet up to 6 times in one night!
I have noticed that after I go to the toilet and think I've finished I stand up and then need to go again! There seems to be something going on where it does so much and when I stand up and wipe myself it needs to go again. Quite a bit came out the second time. It's as if it doesn't quite time the emptying right and leaves half in all the time.
Sorry about my large blocks of print. I have tried to break it up as much as I can this time round. :)
Many thanks for both of your great help.
Kind regards
Niad
Snoopy61
06-19-2009, 11:40 AM
Is there any way maybe you could get rid of the 'urge' sensation or other painful bladder feelings though? There must be something they can at least do.
As for my tests, that makes sense what you said.
Sorry about my large blocks of print. I have tried to break it up as much as I can this time round. :)
You did good breaking up your print! Thank you!
The pain, urgency/frequency, and pressure are believed to be neuropathic (nerve pain) which can be difficult to treat.
I have tried numerous meds for the pain, meds for nerve pain. The pain, pressure and urgency comes and goes regardless of the meds and I had two of the meds cause suicidal ideation.
That did it for me, I'm done trying to treat with meds and have learned to cope and move on, but I know whys and you don't.
Has anyone ever suggested or have you tried - when you urinate do not get up right away, try masaging and or gently pushing on your abdomen.
Focus on relaxing. I am quite sensitive to touch and if I run my fingers lightly along my arms it will bring on chills and in most cases I will urinate a little more - I know it sounds strange :)
I have also had the same experience - go to wipe and end up going more...so annoying.
As for my tests, that makes sense what you said.
Sorry about my large blocks of print. I have tried to break it up as much as I can this time round. :)
You did good breaking up your print! Thank you!
The pain, urgency/frequency, and pressure are believed to be neuropathic (nerve pain) which can be difficult to treat.
I have tried numerous meds for the pain, meds for nerve pain. The pain, pressure and urgency comes and goes regardless of the meds and I had two of the meds cause suicidal ideation.
That did it for me, I'm done trying to treat with meds and have learned to cope and move on, but I know whys and you don't.
Has anyone ever suggested or have you tried - when you urinate do not get up right away, try masaging and or gently pushing on your abdomen.
Focus on relaxing. I am quite sensitive to touch and if I run my fingers lightly along my arms it will bring on chills and in most cases I will urinate a little more - I know it sounds strange :)
I have also had the same experience - go to wipe and end up going more...so annoying.
Niad
06-20-2009, 10:52 AM
Hi, Snoopy61. :)
Thanks for your helpful reply.
I am pleased you were happy with the way I broke the text up as I was not quite sure how much to break it up.
The meds that you described that you mention causing suicidal ideation may have been antidepressants as my urogynaecologist wants me to take them for my bladder to enarge its capacity or something like that but I have read and heard that antidepressants can cause those side effects.
It has been suggested that when I go to the toilet to push on my abdomen when I actually go but not while not going as it can, because of my retention, cause backflow to the kidneys. Though everything I've tried so far for my bladder has not made any difference. The retention needs to be got rid of first as it is making me get loads of infections.
I have also tried the bladder re-training which is what you menton where you say to hold on for as long as possible sort of thing but it does not work for me. It gets more painful as my bladder fills up as I am getting distended from the retention. I have to go and get it out. It is the only thing that really relieves some of the pain and discomfort.
I totally agree, focusing on relaxing is very important.
That 'dribbling' and needing to go again after just going is very annoying. My bladder emties so far then stops and then begins to carry on - I think they call it an interrupted flow. My cystoflowmetry (where you sit on a toilet and the flow is measured) results were abnormal but I cannot remember in what way they were abnormal.
I'll keep you updated on anything new that happens and also the outcome of the lumbar puncture.
They do suspect I may have a syndrome called Fowler syndrome and are sending me to a neuro-urologist to get some more tests and hopefully some form of treatment that works.
I'll let you know how it goes. I haven't got a referral done yet as my urogynaecologist forgot or did not do it for some unknown reason so I have had to leave my GP a message instead to do it.
Kind regards
Niad
Thanks for your helpful reply.
I am pleased you were happy with the way I broke the text up as I was not quite sure how much to break it up.
The meds that you described that you mention causing suicidal ideation may have been antidepressants as my urogynaecologist wants me to take them for my bladder to enarge its capacity or something like that but I have read and heard that antidepressants can cause those side effects.
It has been suggested that when I go to the toilet to push on my abdomen when I actually go but not while not going as it can, because of my retention, cause backflow to the kidneys. Though everything I've tried so far for my bladder has not made any difference. The retention needs to be got rid of first as it is making me get loads of infections.
I have also tried the bladder re-training which is what you menton where you say to hold on for as long as possible sort of thing but it does not work for me. It gets more painful as my bladder fills up as I am getting distended from the retention. I have to go and get it out. It is the only thing that really relieves some of the pain and discomfort.
I totally agree, focusing on relaxing is very important.
That 'dribbling' and needing to go again after just going is very annoying. My bladder emties so far then stops and then begins to carry on - I think they call it an interrupted flow. My cystoflowmetry (where you sit on a toilet and the flow is measured) results were abnormal but I cannot remember in what way they were abnormal.
I'll keep you updated on anything new that happens and also the outcome of the lumbar puncture.
They do suspect I may have a syndrome called Fowler syndrome and are sending me to a neuro-urologist to get some more tests and hopefully some form of treatment that works.
I'll let you know how it goes. I haven't got a referral done yet as my urogynaecologist forgot or did not do it for some unknown reason so I have had to leave my GP a message instead to do it.
Kind regards
Niad