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  1. #16
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    Re: IC a neurological problem?

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    I have MS and didn't have IC that I know of at the time. I went threw years of pelvic inflammation and burning and irritation as male I notice it's little different for women then men. From what I been reading but nobody actually ruled out I had IC they kept saying it was my MS and and it effects the bladder. Then I found a great uro who for the first time ruled out I had IC and it could be from the things I'm eating and MS. As for being a neurogenic issue I couldn't tell you. I have bladder spasms and neurogenic bladder. They say it from MS so that's a good question I hope to keep searching for answers to keep me update on how keep me comfortable and these forums help 👏

  2. #17
    ICN Member jvr's Avatar
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    Re: IC a neurological problem?

    Hi Miss M,
    Are you seeing Dr. Christopher Payne? If so, I was hoping I could ask you a few questions...
    Thanks,
    Jill

  3. #18
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    Re: IC a neurological problem?

    I posted this question in another thread and decided to add it here, as well, in hopes of a better response: my urologist wants me to see a neurologist to see if there's anything wrong from that side of things (I am still going through the diagnostic process for IC). I try to be as informed as possible before any doctor's appointment so I know what the doctors are talking about, but I'm not sure what to expect from a neurologist. What kinds of tests do they typically run when you have bladder problems? Any generic information would be appreciated! I'd like to be a little prepared so I can ask questions of the doctor if necessary. Thank you!

  4. #19
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    Re: IC a neurological problem?

    I think it depends on your symptoms. I know years ago when I first began having health issues ( this was before IC), I had developed this severe burning in my throat and upper esophagus. It was so awful, kind of like the burning and pain I have from my IC, except it was in my throat and it was constant. I saw a neurologist and he said it was possible that I was experiencing nerve pain and offered me a script for Elavil. It did Not help the burning in my throat though.

    I will say that the tests they usually do are EMG testing to check to see if the nerve signals are still functioning like they should, but this is usually done for people who have neuropathic pain or tingling, numbness in the hands, feet, arms or legs. I am not certain a neurologist is going to have any answers for you when it comes to IC. Now if you are having an issue per say with voiding, like if you are not getting the signals to tell you when to urinate, then maybe they will be able to tell you something about that , but I am not sure. My uncle is having issues with burning and pain in his feet and legs. He went for a neurological consult and they did tests on him like the EMG test as well as some blood work. It wont hurt to go and see what the neurologist has to say.






    Quote Originally Posted by Asha View Post
    I posted this question in another thread and decided to add it here, as well, in hopes of a better response: my urologist wants me to see a neurologist to see if there's anything wrong from that side of things (I am still going through the diagnostic process for IC). I try to be as informed as possible before any doctor's appointment so I know what the doctors are talking about, but I'm not sure what to expect from a neurologist. What kinds of tests do they typically run when you have bladder problems? Any generic information would be appreciated! I'd like to be a little prepared so I can ask questions of the doctor if necessary. Thank you!

  5. #20
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    Re: IC a neurological problem?

    Thank you, Jen! I think my doctor is sending me there because I am also having retention issues. It makes sense that they want to check the pathways, I just don't know how they test that! I definitely am going to see what the doctor has to say, I just hate not knowing what to expect. I appreciate your response!

  6. #21
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    Re: IC a neurological problem?

    please let us know how it goes and what they do.
    i definitely have nerve issues as sometimes have no urge to go. also i've noticed that if i need a BM, my IC symptoms disappear. must press on a nerve. physio said i have knots right where nerve endings are, so that could be part of it, so we'll see if it gets better if we can relaxed them. but i have been wondering about getting it checked out if it doesn't improve.

  7. #22
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    Re: IC a neurological problem?

    Kiki, I'm happy to keep you updated! My appointment is not for a few more weeks, so it's a waiting game for now! I'm not diagnosed with anything yet (although I - and several of the many specialists I have seen so far - strongly suspect IC), so I think they are just trying to rule more things out. All of the waiting and not knowing is really starting to get to me.

  8. #23
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    Re: IC a neurological problem?

    Donna always says the waiting is the worst bit, and she's definitely right. once you know what is going on, you can take more educated action…
    good luck and keep us updated!

  9. #24
    ICN Member jvr's Avatar
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    Re: IC a neurological problem?

    Hi,
    I'm trying to wrap my head around this. So if the latest theory of IC ends up being true with IC being neurological with it being a central nervous system disorder... would foods still be thought to irritate us? It doesn't seem like acidic foods would effect a neurological disorder? Oh, how I would love to sit down with one of these IC researchers and ask questions...
    Jill

  10. #25
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    Re: IC a neurological problem?

    Theoretically lets say IC is a neurological issue. Neurological issues can actually cause inflammation in different parts of the body. When something is wrong in the neurological system, the brain is also affected. The brain is what sends the signals to the cells and the nerves in the body. If the brain feels that something is not right, it is going to send signals out to the nerves. There definitely can be inflammation in regards to neurological manifestations.

    I am not certain IC is neurological at this point, or at least I am not sure if that is the main cause. I do however think different things such as ongoing onslaught from pathogens( bacteria, viruses, parasites etc..)can lead to a chronic form of neuropathic pain. This is where the nerves themselves are inflamed. So I think foods would be able to aggravate an already inflamed area. That is just my thought.







    Quote Originally Posted by jvr View Post
    Hi,
    I'm trying to wrap my head around this. So if the latest theory of IC ends up being true with IC being neurological with it being a central nervous system disorder... would foods still be thought to irritate us? It doesn't seem like acidic foods would effect a neurological disorder? Oh, how I would love to sit down with one of these IC researchers and ask questions...
    Jill

  11. #26
    ICN Member MissM's Avatar
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    Re: IC a neurological problem?

    Hi Jill,

    I decided to update my own thread. I've been taking Neurontin (Gabapentin) for over a month and will be at 1800mgs this thurs. What it has helped with: That deep muscular ache that is constant in my bladder. What it hasn't done: Refuced bladder filling pain (I still burn), urgency, and bladder swelling.

    So my thoughts are.. If this is entirely a neurological issue for me, wouldn't the burning be reduced? Dr. Payne said the "burn" feeling is most likely nerve pain, but now I have my doubts.

    I see him in a few weeks regarding my progress and will update everyone on his explanation.

    Goodluck all!

    -Maryanne




    Quote Originally Posted by jvr View Post
    Hi,
    I'm trying to wrap my head around this. So if the latest theory of IC ends up being true with IC being neurological with it being a central nervous system disorder... would foods still be thought to irritate us? It doesn't seem like acidic foods would effect a neurological disorder? Oh, how I would love to sit down with one of these IC researchers and ask questions...
    Jill

  12. #27
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    Re: IC a neurological problem?

    yes, I had remission from taking nerve pain medication.. I had 3 years without pain, however I didn't have a lot of bladder symptoms, only urgency but not frequency, to be honest it was nothing compared to the vulvodynia electric pain...

    I had 1 year and 4 months of no medication, felt normal..3 years in total of no pain..it;s now returned because I'm an idiot and didn't control my anxiety and severe stress,..

  13. #28
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    Re: IC a neurological problem?

    Quote Originally Posted by maryjane87 View Post
    yes, I had remission from taking nerve pain medication.. I had 3 years without pain, however I didn't have a lot of bladder symptoms, only urgency but not frequency, to be honest it was nothing compared to the vulvodynia electric pain...

    I had 1 year and 4 months of no medication, felt normal..3 years in total of no pain..it;s now returned because I'm an idiot and didn't control my anxiety and severe stress,..
    Mary Jane......I'm sorry to hear of your relapse. This thread is pretty old. I found out I have Parkinson's disease. It started with bladder issues but now i have a myriad of other issues. I take a ton of drugs but am actually much better. It's a very strange disease. I was told I have a mild case of IC but I don't believe I have it. Good luck to you

  14. #29
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    Re: IC a neurological problem?

    Really sorry to hear that, KateKline. I know Michael J Fox has the same and he started this Foundation.. I think too much money goes into Cancer research when cancer will never ever have a cure, only management therapy, and all other medical conditions are left aside, chronic pain included.
    Best,
    xxx

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