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New to the MS world: Are these symptoms or something else?

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    New to the MS world: Are these symptoms or something else?

    Hello everyone!

    Late last year I was diagnosed with Clinically Isolated Syndrome due to MS style lesions on the brain (my cervical spine was clear, and they haven't done a Tspine MRI), oligoclonal bands in my spinal tap, and a short bout of nystagmus (less than 24 hours, but with everything else and some of the below symptoms my docs thought there was enough evidence for the CIS diagnosis). I started Copaxone in November. So far, that's going pretty well it's just annoying, painful, and leaves some lumps that eventually go away.

    Anyway, I was curious if anyone was familiar with any of the following symptoms. I have, of course, gone over them with my neuro (an MS specialist), but I thought I'd ask those who've experienced it.

    -Anxiety and depression (I know that's not an ultimate sign since it happens in so many other people, but it can be part of it).

    -Numbness, tingling, or pinpricks: I get this mainly in my hands or feet. It can be one or the other or both. Sometimes it seems triggered by holding something or having my hands in a certain position (like falling asleep, but more easily than it used to), and other times it's just random. Sometimes I've had the tingling in other places of my body. It doesn't last for 24 hours or more at time, but I do experience it every day on and off throughout the day. I've heard about paroxysmal symptoms which sounds interesting.

    -Dizziness/vertigo: I'm not sure which is which, but sometimes I have this almost dizzy/slightly off balance/wobbly feeling. Never enough to limit my activities or make me fall.

    -Pressure in head: Sometimes I've felt like this pressure/unfocused eyes feeling. When I work at it, I can focus though.

    -Nystagmus: I've experienced this years ago (feeling like the world around me was shifting back and forth, I wondered if people could see my eyes shaking, but never asked). The most recent episode involved waking up from a sleep to this (I was dreaming that I was spinning). After getting a drink of water and using restroom, I went back to bed and woke up fine.

    -Sensitivity to noise and commotion: Not sure if this is just my anxiety, but I've become increasingly sensitive to noisy environments or commotion. Not all the time, but frequently. It makes me feel really irritated, overwhelmed and like I want to escape the situation.

    Fairly frequent migraines and headaches: This has been something I've dealt with for many years.

    Seizures: I had 2 seizures (in the same day) back in 2012. Been on medication and seizure free ever since.

    My most recent issue (about to go see my primary care doc about it, as I think it's more likely due to some other issue than to be MS related) is pain in my right hip. Predominately along the groin area and sometimes along the outer side. Kind of like an aching or burning sensation. Not all day, but has been happening since probably January. Not severe, but the length of time is worrying me. Tends to be more noticeable at rest.

    Anyone experience anything like these or know anything about it? Thanks so much!

    #2
    Hi ElemteacherPK6 and welcome to MSWorld! We're glad you found us, but I'm sorry you are experiencing lots of different symptoms. That is the nature of MS. Much of what you describe could be the same for many of us. Each one of us have different symptoms that come and go and some have lasting symptoms. And many of us, in addition to MS DMT's (disease moderating treatments), also use meds for symptom management.

    An article from the NMSS (National MS Society) lists common and not so common symptoms that you will find helpful. https://www.nationalmssociety.org/Sy...is/MS-Symptoms

    We hope to see more of you and ask as many questions as you need. We have a wonderful support system in place here and many knowledgeable members.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Originally posted by ElemteacherPK6 View Post
      Hello everyone!
      ...

      Anyway, I was curious if anyone was familiar with any of the following symptoms. I have, of course, gone over them with my neuro (an MS specialist), but I thought I'd ask those who've experienced it.
      I experienced some of them. Anxiety, dizziness.
      The weird things about MS, though, is that because it is neurological and the brain controls everything, any symptom could be MS, but that doesn't mean that it is.

      An MS dx is often a process, sometimes a long process, of ruling out lots of other dx first.

      Welcome to MSWorld.
      ~ 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


        #4
        Hi Elemteacher

        Welcome!

        I have experienced most of the symptoms that you have listed, except for the migraines and headaches, seizures, and hip/groin pain.

        Hope you continue to share your experiences and ask questions, and we'll be glad to help, if we can.

        Take Care
        PPMS for 23 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Yes all of the above except for the seizures , plus more. Iím PPMS. I donít think many here complain about having seizures or if in fact itís a symptom of MS ? Makes me wonder? Good luck.
          It was one agains't 2.5million toughest one we ever fought.

          Comment


            #6
            Originally posted by oceanpride View Post
            Yes all of the above except for the seizures , plus more. Iím PPMS. I donít think many here complain about having seizures or if in fact itís a symptom of MS ? Makes me wonder? Good luck.
            I don't think those were from my CIS (doctors haven't mentioned that either), I just thought I'd bring it up because you never know. Thanks for replying!

            Comment


              #7
              Welcome to MS World. I'm sorry you have to deal with MS, but glad you found your way here.

              The majority of the symptoms you inquired about are consistent with MS. Many times MSers (and doctors) assume a symptom is MS-related when there may be a different underlying cause. MS mimics so many other conditions it's always wise to rule out other potential causes. I keep a symptom journal and share that with my medical team at appointments.


              Headaches and Migraines do occur at a greater rate in MS patients, but not generally considered a hallmark MS symptom.
              https://msfocusmagazine.org/Magazine...-Meets-the-Eye

              Likewise, seizures are not commonly considered a MS symptom, but MS patients appear to be at a greater risk when compared to the general population.
              https://www.mayoclinic.org/diseases-...s/faq-20058138

              The medical term for the numbness, tingling, pinprick sensation is paresthesia.
              https://www.msfocusmagazine.org/Maga...ut-Paresthesia

              Again, welcome to MS World and I wish you well...

              Comment


                #8
                Hello Elemteacher and welcome to MSW.

                I can relate to the numbness, tinging and pinpricks and the thing that jump out at me was the burning pain in groin and down your leg. I have been having this for months off and on but mine will go into my foot and I am unable to put my foot on the floor it hurts so bad and then it goes away until the next time.

                Again welcome
                God Bless Us All

                Comment


                  #9
                  Thank you all for the welcome and replies!

                  Comment


                    #10
                    Hi Elemteacher and welcome. By your user name, you teach pre- Kindergarten to 6year olds or 6th grade? Either way, kudos. Keeping up with them is high energy!

                    As to symptoms, yes to all but seizure. Although I was tested for them prior to diagnosis.

                    For me, some of the symptoms are constant. For others, they appear when overly fatigued, over heated, or with a fever. Once the cause is addressed by resting, cooling down, or breaking the fever, they disappear. You may hear some people reference these type as paroxysmal symptoms.

                    I kept a symptom diary as well. If you do, it is a fine balance between documenting and getting obsessively focused on symptoms - at least for me it was. If you are interested, it may be a good topic for a new thread - seeing how people track.

                    Welcome again!
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      Originally posted by pennstater View Post
                      Hi Elemteacher and welcome. By your user name, you teach pre- Kindergarten to 6year olds or 6th grade? Either way, kudos. Keeping up with them is high energy!
                      I currently am teaching Kindergarten. My license is Prek-6th grade and I've been moved around quite a bit so that's why I don't want a user name that reflects on particular grade.

                      Comment

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