I think I am in need of more opinions and encouragement. It's possible the encouragement is more of what I seek! :)
I'm in what you all call "limbo land" with no diagnosis, though my body and my heart tell me SOMETHING is definitely going on. This is the only place I feel truly understood- as you all know, it's terribly frustrating when you know something is wrong and you are dismissed by doctors and the people in your life have a hard time understanding why you are tired or there's some physical something going on all the time...even though the doctors can't find anything wrong.
It can make even the strongest person feel a little crazy.
I'm divorced. My 12 year old daughter spends half her time at my house and half at her dad's house, who just remarried. Apparently my daughter told her stepmom how much I sleep and was told that I am depressed. I work so hard to be physically the best I can be for my kids, but my lifestyle has positively changed over the last two years. The fatigue is terrible. But I'm not depressed. I don't WANT to sleep all the time... my body is just SO exhausted some days....you might be able to relate.
Anyways, I'm trying to stay focused on getting a diagnosis. I have requested a copy of my medical records to look at myself and I'm currently waiting on a referral for a second opinion with a university neurology department.
In the meantime, I have a few questions about my most recent symptoms. I had surgery in November for incontinence- had a bladder suspension. It seemed to have been effective at first. About a month ago I started feeling like I had an infection...like I had to pee all the time. But I didn't have an infection. It has continued- I feel like I have to go almost all the time.... I go very frequently, especially at night and it hurts, especially at night, like the pain you feel when you are holding it (except I just went). Twice in the past several days I've had the incontinence again, I would call it stress... while running or laughing but lost urine, which is what the surgery was supposed to have corrected. :(
And since I have absolutely no shame anymore :) I had a rectocele too....I'm noticing it seems like I really am not aware when I need to have bowel movement. When I go in the bathroom to have one, I am not always aware that I am going to have one when I go in... I don't recall that being normal in the past... is it??
Do these things sound neurological to you "experts"??
Sorry to hear you are having such a hard time. None of us are 'experts' on this forum but unfortunately do have some experience with the issues you mention.
Urinary frequency and bowel issues are common symptoms in MS but unfortunately do also occur in other diseases.
About the only thing I can suggest you do is keep a detailed diary so you can see whether there is a pattern to your symptoms, ie a relapse and remission, change in symptoms, new ones, disappearing symptoms etc and whether they are affected by anything.
I dont think I can encourage your focus being on MS because you have more immediate issues that I dont think has anything specifically to do with MS and 'that' needs dealing with first!
It sounds like your having problems that your dr needs to be dealing with asap, a month of this is too long, its getting worse not better and your bladder surgery is too close for it to be coincidental. Infection is not the only cause of your sx's and if there is 'still' no infection being detected, (which is screaming cystitis to me) then it will be one of the other causes ie interstitial cystitis, stones etc and they all should be investigated!
You have a reason to be sleeping all the time, your currently dealing with bladder issues that are not letting you sleep properly or be normal healthy, so forget about what interlopers think your problem is........sit your daughter down and explain to her that your bladder is causing you some problems still, its keeping you up at night and thats why your so tiered during the day. If your not depressed, make a point of telling her that your sleeping so much not because your sad or unhappy but because you have a medical condition, at 12 she should be old enough to understand more but that basically is enough.
You've asked "if these things sound neurological" and from my perspective and understanding, the answer would be no because there is nothing specifically standing out to indicate it being neurological over the more common reasons. This is a good informational article on bladder and bowel issues in MS http://www.msnz.org.nz/Document.Doc?id=28
You say, “I started feeling like I had an infection...
I had to pee all the time…
I feel like I have to go almost all the time…
I go very frequently and
It hurts, like the pain you feel when you are holding it…
I've had the incontinence again.”
These are all signs of bladder spasms. Such spasms sometimes do happen to people with MS but any neurologist would want you to check this out with your surgeon or urologist before investigating neurological causes.
I think JJ (supermum) is right. You have other areas of health concern that are important to finish addressing right now. Do you have more than the elimination symptoms and the fatigue going on? I’m not saying these things aren’t enough to drag anybody down. There are too many potential explanations for fatigue to start thinking MS unless you’ve had multiple other symptoms along the way.
I’ll give you all the encouragement you need though to look for a physician who will LISTEN to you if your current docs aren’t doing so. Too often our docs want us to play by what I call aqua rules - ones that are so fluid and changeable that they fail to give useful direction. If we’re patient then whatever our complaint is can’t be that bad. If we get teary we’ll probably be labeled stressed out or anxious. When we assert ourselves we risk the label of crazed hormonal creature. It seems to be easier to spend time trying to convince us we’re overly sensitive to body or health issues than it is to actually do an investigational history and physical.
Don’t waste more time on a doc than he’s willing to spend on you. After all, you hired him (no matter who helps you pay his bill). Make him earn what he gets or look for a more worthy provider. I do hope you find answers soon and start to feel better
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