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In Limbo Land - Strange Symptoms

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    In Limbo Land - Strange Symptoms

    In January 2013 I began having burning sensation nerve pain on the top and inside of my thighs. Tight pants or cold wind would make the burning worse and especially at night. I have also had muscle twitching all over but mainly in my feet, legs, and arms. Brain fog will come and go.

    I had clean MRIs, clean EMGs, but 3 positive ANA tests that were as high as 1:640. Although the ANA test was positive the tests for specific Autoimmune diseases have been negative. My vitamin D level was low but is back to normal and symptoms still persist.

    I’ve lived with the nerve pain predominantly in my legs for the past 7 years, some days worse than others.

    Fast forward to 2020, and I have more trouble concentrating, feels like I’m seeing but not processing fast enough/concentrating and some cases of sensory overload. Diagnosed with PLMD, and more nerve pain in the same spot in my thighs, arms, shoulder and back. Haven’t been able to get any answers.

    I had MRI of my brain and C-spine 1.5T which was clear last week. EMG/NCV was also clear. Still worried that I could have MS as my thighs continue to burn and feel like my visual processing is slow. Hopeful that 2 clean MRIs, 1 in 2013 and 1 in 2020 make it unlikely..

    Also, my neuro said my knee reflexes were "brisk" but not pathological/abnormal.

    Anyone else have these symptoms or feel that they are indicative of MS? Haven't been able to get any answers and frustrated after 7 years.





    #2
    Hello Cougars21 and welcome to MSWorld

    I didn't know what PLMD was so, I went to Google and found out it is Periodic Limb Movement Disorder. Hope I have that right

    https://www.webmd.com/sleep-disorder...ent-disorder#1

    Obviously I don't know anything about PLMD but hope your Dr. has given you something to help. From what I understand PLMD is a sleep disorder, have you had a sleep study done?

    As far as MS, I don't know. The ANA test would not indicate MS as a possibility, some of us have normal range ANA and some don't. In all the years I have had MS my ANA has always been in the normal range.

    Many things can mimic the symptoms of MS, for this reason it's impossible to know if your symptoms are due to MS or not. I wish you all the best, take care.
    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

    Comment


      #3
      I'm not really concerned with the PLMD, its just me kicking in my sleep when I fall asleep.

      What I'm really interested are thoughts on clean MRIs 7 years apart both on 1.5T , although I still have the deep burning nerve pain, especially at night when I'm going to sleep. It's pretty symmetrical on both thighs. Other symptoms are slow processing visually, not sure if its perceived or but seems very real, and trouble concentrating.

      Comment


        #4
        Originally posted by Cougars21 View Post

        What I'm really interested are thoughts on clean MRIs 7 years apart both on 1.5T , although I still have the deep burning nerve pain, especially at night when I'm going to sleep. It's pretty symmetrical on both thighs. Other symptoms are slow processing visually, not sure if its perceived or but seems very real, and trouble concentrating.
        It's rare that a patient is diagnosed without lesions, but it does happen. Since there are no presenting symptoms that are unique to MS, a differential diagnosis is required.

        With a PLMD diagnosis being the suspected cause of your pain that would take MS off the table for that symptom. Yes, people can be misdiagnosed, but burning thighs isn't a hallmark sign of MS.

        I'm sorry to not be of more assistance, but I wish you well.

        Here's a link about diagnosing MS:
        https://www.nationalmssociety.org/Sy.../Diagnosing-MS

        Comment


          #5
          Hi Cougars21

          Originally posted by Cougars21 View Post
          Haven't been able to get any answers and frustrated after 7 years.
          I can understand why you would be frustrated, especially when you've been wanting answers for your symptoms for 7 years.

          I'm wondering if your PCP or neuro have any other ideas as to what could be causing your symptoms, and are there more tests on the horizon for you?

          MS does seem unlikely, without any abnormalities on MRI, or EMG, or clinical neuro exam - especially after 7 years.

          I can't think of any suggestions, except for another doctor's opinion - if your current doctor is done with all possible tests.

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Welcome to MSWorld.

            How frustrating, to be dealing with unexplained symptoms for 7 years. I hope you get some answers soon.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Originally posted by SNOOPY View Post
              Hello Cougars21 and welcome to MSWorld

              I didn't know what PLMD was so, I went to Google and found out it is Periodic Limb Movement Disorder. Hope I have that right

              https://www.webmd.com/sleep-disorder...ent-disorder#1

              Obviously I don't know anything about PLMD but hope your Dr. has given you something to help. From what I understand PLMD is a sleep disorder, have you had a sleep study done?

              As far as MS, I don't know. The ANA test would not indicate MS as a possibility, some of us have normal range ANA and some don't. In all the years I have had MS my ANA has always been in the normal range.

              Many things can mimic the symptoms of MS, for this reason it's impossible to know if your symptoms are due to MS or not. I wish you all the best, take care.
              Thanks Snoopy. I haven't' had a sleep study done but the pulmonologist said that my legs jerking at night as I'm falling to sleep are textbook PLMD. This was kind of the trigger that brought my MS concerns back to the forefront after 7 years of burning/throbbing/tight pain on top of my thighs and inside. That and the feeling of sensory overload visually sometimes where it feels like I can't process fast enough or trouble concentrating.

              Comment


                #8
                Originally posted by Marco View Post
                It's rare that a patient is diagnosed without lesions, but it does happen. Since there are no presenting symptoms that are unique to MS, a differential diagnosis is required.

                With a PLMD diagnosis being the suspected cause of your pain that would take MS off the table for that symptom. Yes, people can be misdiagnosed, but burning thighs isn't a hallmark sign of MS.

                I'm sorry to not be of more assistance, but I wish you well.

                Here's a link about diagnosing MS:
                https://www.nationalmssociety.org/Sy.../Diagnosing-MS
                Thanks Marco. Do you think my presentation sounds like MS symptoms or that I would've had lesions by now after two rounds of MRIs 7 years apart? I guess my concern is that they just didn't show up on the MRI but will at a later date...

                Comment


                  #9
                  Originally posted by KoKo View Post
                  Hi Cougars21



                  I can understand why you would be frustrated, especially when you've been wanting answers for your symptoms for 7 years.

                  I'm wondering if your PCP or neuro have any other ideas as to what could be causing your symptoms, and are there more tests on the horizon for you?

                  MS does seem unlikely, without any abnormalities on MRI, or EMG, or clinical neuro exam - especially after 7 years.

                  I can't think of any suggestions, except for another doctor's opinion - if your current doctor is done with all possible tests.

                  Take Care
                  Thanks KoKo.

                  The neuro and PCP don't have any other ideas for additional testing at this time. More of a "if you have new symptoms that come up, come see me again." The neuro is apparently one of the best in the area and started the practice at a large university so I do respect his opinion, although maybe should get another opinion. This is my 2nd evaluation (one in 2012 and one most recently in 2020).

                  Comment


                    #10
                    Originally posted by Cougars21 View Post
                    Fast forward to 2020, and I have more trouble concentrating, feels like I’m seeing but not processing fast enough/concentrating and some cases of sensory overload. Diagnosed with PLMD, and more nerve pain in the same spot in my thighs, arms, shoulder and back. Haven’t been able to get any answers.
                    Cougars21

                    The main issue, from my perspective, is that there are only subjective symptoms.

                    Since there is no evidence from your diagnostic tests, there should, at least, be some objective signs of neurological deficits (that are suggestive of MS) revealed during your neurological exam.

                    https://multiplesclerosis.net/diagno...ological-exam/

                    Take Care
                    PPMS for 22 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #11
                      The burning sensations on my thighs/muscle twitching/throbbing mainly bothers me at night or in the morning when covers are on them. I either don't notice during the day or its not as severe.

                      I of course don't want to have MS, and nothing has come up on my tests yet, just seems like I have many similar symptoms that are unexplained: burning legs, muscle twitching, brain fog, trouble concentrating, fatigue...

                      Comment


                        #12
                        The burning sensations on my thighs/muscle twitching/throbbing mainly bothers me at night or in the morning when covers are on them. I either don't notice during the day or its not as severe.

                        I of course don't want to have MS, and nothing has come up on my tests yet, just seems like I have many similar symptoms that are unexplained: burning legs, muscle twitching, brain fog, trouble concentrating, fatigue...

                        And it seems like some people have clean MRIs for years before anything is found. This worries me. I've had one in 2012 and another most recently.

                        Comment


                          #13
                          Hi Cougars21.

                          That and the feeling of sensory overload visually sometimes where it feels like I can't process fast enough or trouble concentrating.
                          I of course don't want to have MS, and nothing has come up on my tests yet, just seems like I have many similar symptoms that are unexplained: burning legs, muscle twitching, brain fog, trouble concentrating, fatigue...
                          Your diagnosis of PLMD can account for your symptoms. Sleep disorders disrupt sleep even if you believe you are sleeping fine. Over time the sleep disorder can cause fatigue. Fatigue/being tired can then cause brain fog and trouble with concentration. Muscle twitching and your burning legs could be due to just about anything including PLMD.

                          From what you have posted and from what your Neurologist has said there doesn't appear to be a reason to suspect MS as a cause for symptoms.

                          The neuro is apparently one of the best in the area and started the practice at a large university so I do respect his opinion, although maybe should get another opinion. This is my 2nd evaluation (one in 2012 and one most recently in 2020).
                          You can get another Neurological opinion if you so choose. However, without testing that indicates MS you will not receive a diagnosis of this disease ~ you have clear MRI's and do not meet the criteria (The Revised McDonald Criteria).

                          Maybe it might be a good idea in finding treatment for your known diagnosis - PLMD. As PLMD is treated properly you might find other symptoms improving.

                          Take care.
                          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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