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  • Please tell me what my problem is!

    I've been a quad for 21 years.
    Eight weeks ago, two strange occurrences began happening in my body: the muscle spasms in my legs dramatically increased and my nights became sleepless due to the sensation of needing to urinate. After about two weeks of calling help to come over in the middle of the night to check my catheter and leg bag, I learned that my new nighttime “pee feelings” were happening even with no catheter problems or no full bladder issues. I contacted my urologist and checked for kidney stones and/or a bladder infection. I had no kidney stones, but I did have a bladder infection. After two rounds of antibiotics, the infection was gone. During the course of those couple of weeks, these annoying nighttime “pee feelings” just about stopped. I had hoped, though, that they would have completely stopped after the infection was gone. I then contacted my general doctor to have some blood work done. All of my numbers turned out perfect. I then saw my mom’s doctor, a Tibetan doctor who studies pulse points. He said that I was in excellent health and could not find any problems.
    All three doctors’ news was good, but I still was having intense spasms and occasional nighttime “pee feelings”. I write “pee feelings” in quotes, because yesterday I realized they are not exactly pee feelings. I have always called them that, because I get those feelings when I need to pee. But technically it is just mild autonomic dysreflexia. I get cold and slightly sweaty when I have a full bladder. But yesterday, when I was stuck in bed trying to avoid getting a pressure sore on my bottom, I noticed that I was getting my “pee feelings” every time I was lying on my left side. This made me think that maybe these feelings had nothing to do with my bladder, but maybe there was something else wrong and it was causing dysreflexia.
    So that's where I am now. Three doctors have told me that there is nothing wrong. I have changed nothing in my routine or diet. But still I have these symptoms. Does anyone have any suggestions for me, please?

  • #2
    Big Dave,

    It's possible for me to induce Autonomic Dysreflexia-Hyperreflexia by laying in one position too long (repetitious contact in one area or catecholamine build-up from inactivity) or position changes. I'm curious if your are now inducing AD with a new triggering mechanism that wasn't present during the last 21 years and if it indicates any sensory return?

    Joe

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    • #3
      I know what you mean by "pee feelings", I get those when my bladder is full because my catheter isn't draining but usually that's not true, half of the times it turns out to be gas. I can't tell the difference between a bowel movement and bladder spasms sometimes, so I pay a really close attention whenever I feel that. So maybe you have really bad gas, just a silent non-smelly type (if that exists LOL). Hope this helps
      C-5/6, 7-9-2000
      Scottsdale, AZ

      Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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      • #4
        Any form of noxious stimulus that your body interprets as pain can cause AD. This can include being in the same position too longer, on the wrong mattress, or even stretching during range of motion exercises.

        Since you are using an indwelling catheter, how much anticholenergic medication are you taking to reduce pressures and bladder spasm? This will also usually help to limit or eliminate AD from the irritation of the catheter. If you are sure your catheter is draining well, and there is no tension on the catheter (it is properly secured to prevent this), it is much more likely that it is bladder spasm that is causing your AD. Talk to your urologist about options for management.

        Also, keep in mind that you should NOT be treating bladder colonization with an indwelling catheter unless you have a true infection (fever, chills, malaise, bad AD, etc.).

        Suddenly increased spasticity can also come from any source of body pain, and not necessarily in the body part that has the increased spasms. Fractures, UTIs, impactions, and pressure ulcers are frequent causes of suddenly increased spasticity, and should be a trigger to investigate further to determine the cause and eliminate it.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          I actually do intermittent cath throughout the day but at night tape a catheter in place and connect it to a leg bag.
          Yesterday, while stuck in bed, I started to get those feelings within 15 minutes of turning on my left side.
          What other tests should I do?
          Thank you for your responses.

          Comment


          • #6
            Big Dave,

            I suggest that you take your vitals (bp and heartrate) laying on your back and then after you lay on your left side to see what the disparity might be. It does sound like your in a elevated Hyperreflexive state that has you able to trigger AD symptoms in ways that are not normal for you. If it isn't a UTI look toward the heater being on too high, being susceptible to indoor odors from the windows being closed, thicker clothing etc. If you want more suggestions on AD Triggering Mechanisms feel free to ask I've got alot more.

            Joe

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            • #7
              Thanks, Joe.
              Can these AD Triggering Mechanisms cause my intense leg spasms? My spasms are now actually more of a problem than my "pee feelings".

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              • #8
                Leg spasms are usually the first signal that I need to pee. It is for a lot of folks, here. I found that the 'pee feelings' were bladder spasms if ignored then AD is triggered. All connected.
                Anything worth doing, is worth doing to excess

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                • #9
                  this is just me but usually when my leg spasms get intense along with getting AD i am having pain somewhere. now trying to figure out exactly where is the tricky part sometimes but if you say when you lay on your left side it triggers ad i would start there. as mentioned above sometimes gas can trigger it but sounds like to me you have pain somewhere in that area that might need attention if it hasn't subsided. best of luck. keep us posted.

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                  • #10
                    I wonder if your symptoms might be coming from the pressure ulcer that you are trying to prevent. You might have some damage underneath the skin that you can't see. Another thing to take a look at is your toenails- ingrown ones can cause the AD in a hearbeat. Any new stress in your life? While that is not a documented cause of AD, I have known a few people who that is the only thing we could attribute it to. Just a shot - How is your bowel program? If it is not bladder related, the second most commoe cause is bowel.

                    It is not healthy to keep having AD - like you need me to tell you that. I would really try to figure out what might be triggering it.

                    CKF
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                    • #11
                      Big Dave,

                      My spasticity and tremors are always a flag that I'm aggravating my AD.
                      I trigger AD mostly with mechanisms that could not be associated with pain. Listening to music and pleasant conversation have triggered AD. It's like trying to run an appliance on a damaged extension cord, you will eventually blow a fuse and damage the cord further. It can be everything that you hear, see, smell etc. I hate my AD but I'm also strangely fascinated by it. I hope you find that triggering mechanism soon.

                      Joe

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                      • #12
                        Thanks, guys.
                        Well, I checked my toenails, and they're fine. My pee feelings that I've been getting even with an empty bladder are now occurring very infrequently. And I should mention, I would sometimes get them while lying on my right side, too, so it's difficult finding a constant. Basically now I'm wondering why I'm getting these intense spasms in my legs.

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                        • #13
                          Are the intense spasms occurring at any one time in the day? Do they occur with any specific activity? Any specific position?
                          CKF
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #14
                            The spasms are very strong when I wake up. After my morning stretches, they are fine. They start to get strong again in the afternoon, and by bedtime, they are very strong again.

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                            • #15
                              hmmm.. I didn't know that the "leg spasms" were usually from having to go pee... I get them severely every night with AD... but I can't always find the problem.
                              i hope yours has resolved. take care

                              bbs

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