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    #16
    Originally posted by loopey View Post
    Well, this is embarrassing but I feel like there is toilet paper stuck in the crack of my rear.
    Loopy-YES! What a great explanation! I get this with a numb butt! Strange isn't it???
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #17
      Originally posted by loopey View Post
      Well, this is embarrassing but I feel like there is toilet paper stuck in the crack of my rear.
      That must be so flipping annoying! MS is so glamorous.

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        #18
        Originally posted by newbie but goodie View Post
        A couple times I thought I had had an accident! Not sure if that is a paresthesia or not but it feels pretty wacky
        It is

        Starting at the age of 11 I would feel like I was leaking urine. Each time I would check to see if I was wet. Nope! I was dry.

        Sometimes this sensation happened several times a day, once a day and sometimes it would go away for days, weeks, months.

        I think by the time I was about 17 it quit happening and I never gave it another thought.

        About 5 years ago it started happening again (felt like I was leaking but upon checking I was dry), it had been (literally) years since I had even given this sensation a thought.

        When I went in to my neuro I happen to mention it to him he said it was the MS and was a sensory (paraesthesia) symptom.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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          #19
          I also get the water running down my leg (my right leg which is the bad one) and weird butt crack itching/weird feelings too!

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            #20
            Paresthesia?

            I believe I am having parethesia in my hands. My hands have been numb/ tingling for going on 4 years, constantly. I was wondering if there are any tips or tricks that can hopefully get this to stop. It's maddening. I used to draw, write, and do all sorts of things. Now I can't even write. I can enough to get by. I spoke with my neuro about it, useless. She said it's carpel (sp) tunnel. I call bull dookie.

            Also, I have this reoccurring pain in my shoulder. I swear I'd rather have a baby. It's like a cold burning pain that starts in my shoulder and goes up to my ear and down to my elbow. My neuro seems useless because for that she only prescribes pain meds to cover it. Lyrica, 150 mgs. All it does is knock me out so I stopped taking it because I cannot afford to sleep all day. I have things to do.

            I was thinking others that are pretty much going through what I am are better than any "professional" who is not living with the struggles. Definitely better than my doctor who doesn't try to figure out what is going on and just covers everything with medication.

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              #21
              Its a butt thing

              Yes. I have had that stuck in my butt crack, lol.

              Haven't we all, sometime or another
              STR

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                #22
                mlrowley, I have numbness and tingling in both hands all the time. I gets worse when I'm fatigued but it's always there.

                As for neuropathic pain, as far as I know, there isn't much that can be done except meds that target neuropathic pain like gabapentin or lyrica or alternatively, cannabis can help too. Positive thinking and meditation can also help take the edge off.

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                  #23
                  Originally posted by mlrowley View Post
                  My neuro seems useless because for that she only prescribes pain meds to cover it.
                  Unfortunately, that is all any medication for symptoms is going to do "cover it up." There is no cure for MS and no cure for symptoms except to "cover it up" or decrease it so you can be more comfortable and possibly function better.

                  Lyrica, 150 mgs. All it does is knock me out so I stopped taking it because I cannot afford to sleep all day. I have things to do.
                  The downside is many medications used in symptom management have the side effect of drowsiness.

                  Also, I have this reoccurring pain in my shoulder.
                  If you haven't already, you may want to get an x-ray and/or a MRI of your shoulder to rule out any other cause for the shoulder pain. Not everything is MS related.
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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                    #24
                    Does anyone get sudden intense, almost "sharp" itching that is fleeting, but that is so intense it causes your spasticity to kick in and lock up your entire body? It's awful and makes it look like I'm having convulsions!

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                      #25
                      I was reading back on an FB message from 2009 and described this to someone: I get these electric shocks in my brain - my right side loses muscle control - can't walk, talk, write - and at the same time I get a nerve pain in my left arm and shoulder and face that is beyond description - unbelievably excruciating.
                      --------------
                      That was 4 years before I was diagnosed. I thought I was having a stroke, or a seizure or something. The arm nerve pain felt like my arm was on fire from the inside, or that I was being poked with a cattle prod. This lasted almost daily for more than 2 years. No one could figure out the cause, and my MRI showed ONE lesion. I finally had carpal tunnel surgery and it... kinda helped, not totally. I was on neurontin and eating percocets like candy. (didn't get addicted, thank god). I was also told i had pectoralis minor syndrome, and was given stretches to do. My dr called it a 'double crush' syndrome - the median nerve pinched in 2 spots. It eventually faded away. About 10 months ago was the last time I felt even the slightest twinge from it. I'm thinking all that was my very first symptom of MS. Thing is... it was from Sept 2008 until sometime in 2011... kind of long lasting for an MS symptom?

                      Like MLRowley said - my right hand is pretty useless. Well, not really - I can use it fine but it's hard to write, and even to hold a fork properly. Before I was diagnosed I was told it was possibly carpal tunnel, too... It's been like this since all the other weirdness started in 2009 so I'm convinced its permanent damage at this point.
                      No sir, I don't like it.
                      Diagnosed August 30, 2013.

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                        #26
                        Heh! oh, I am so relieved (about the crack thing) I always describe it to my DH as feeling like my pants are packed with heavy, wet clay, or like unibutt...like one BIG numb cheek! I just have to laugh about it ( or it would drive me bonkers).
                        RRMS 2011, Copaxone 2011-2013, Tecfidera 2013-current

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                          #27
                          Like an IV flush??

                          I am a limbo lander, so don't know if this is related or not, but I get a feeling like a new med in an IV. It's cold, under your skin and moving through your body like an IV flush, but it's down the spine and moves outward around both sides of my back. It's intermittent and REALLY disturbing.

                          There's no pain though.

                          Anybody have anything like this?

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                            #28
                            ticking

                            On a particularly warm day on which I had to be active, I got the most annoying sensation. There was a tiny spot on my calf that tickled. And since nothing helped, it was clearly the MS. At least it wasn't pain, but BOY, WAS IT IRRITATING!

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                              #29
                              I have such strange sensations. I have tried to swipe a phantom mouse from crawling up my leg. Also have checked many times to see if a quarter is stuck to the bottom of my foot. These all started just a few months ago. Do they ever go away?

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                                #30
                                numbness in face

                                the area around the left side of my mouth feels numb, but I still have sensation if that make sense.

                                Also has anyone had difficulty hold a pen, like their handwritting suddenly changes to not so great?

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