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    At a loss

    Iím not sure where to start, and Iíll probably forget something, but Iíll make this as brief as possible. Before all this mess started, I was suffering from a horrible case of pulsatile tinnitus (Still am) So an MRI was done and a small aneurysm was detected.(Nothing to worry about)

    A few days later I suffered a horrible all day migraine and it all started from there. Nerve pain.... Brain fog, stumbling for words, irritation, my head felt like it was on fire from electricity and since March it has all been down hill. I have developed periodic paralysis of both my hands/arm, neck and my jaw. They will all also spasm, and get stiff, sometimes lasting for hours.

    On occasion my hands have a tremor and my eye will also twitch. I itch all over and at times I feel a tight band around my chest. I also have pins and needle feeling in my hands, feet and face. I have nerve pain in my jaw, neck, arm back, leg etc... I canít forget about the exhaustion.....I take a nap daily, probably because I canít sleep at night for the pain.

    My dr has put me on Topamax and Cymbalta which does help, but we live in Phoenix and just stepping outside to check the mail in the mornings sends me into a spasm and a headache from the heat. Just cooking breakfast this morning for my kids caused my eye to twitch.

    However.....My spinal MRI was clear as was my MRI of the brain that was done prior to all of this happening. My neurologist just tells me Iím stressed, which couldnít be further from the truth and that ďsome people just have spasmsĒ I guess Iím curious as to what you all would do at this point?

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hello Oklasooner ~

    If you don't mind my asking, did you have any other testing, besides the MRI?

    How did you do with the neurological exam - reflexes, sensory assessment, strength, coordination, optic, etc?

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

    Comment


      #3
      Originally posted by KoKo View Post
      Hello Oklasooner ~

      If you don't mind my asking, did you have any other testing, besides the MRI?

      How did you do with the neurological exam - reflexes, sensory assessment, strength, coordination, optic, etc?

      Thanks!
      I donít mind you asking at all. Even though I have visual disturbance during some episodes, the optic nerve test was normal.

      However, no other testing was ever done besides a nerve study on my hands and feet that showed nerve damage.

      My main concern is continuing damage and the rate at which this is progressing. I have three little boys and it frightens me to drive them around in Phoenix due to the heat and how I react.

      Thank you for your response

      Comment


        #4
        Originally posted by Oklasooner View Post
        I donít mind you asking at all. Even though I have visual disturbance during some episodes, the optic nerve test was normal.

        However, no other testing was ever done besides a nerve study on my hands and feet that showed nerve damage.

        My main concern is continuing damage and the rate at which this is progressing. I have three little boys and it frightens me to drive them around in Phoenix due to the heat and how I react.

        Thank you for your response
        Thank you Oklasooner.

        It seems to me that with your symptoms, further testing would be prudent.

        It's kind of early, in the search for answers, to chalk up all of your symptoms to stress.

        But that is just my non-professional opinion.

        Sorry to hear that you are very heat sensitive. I can certainly understand, as I don't function well when my body gets too warm either.

        Do what you can to stay cool, especially while taking care of your boys.
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Originally posted by KoKo View Post
          Thank you Oklasooner.

          It seems to me that with your symptoms, further testing would be prudent.

          It's kind of early, in the search for answers, to chalk up all of your symptoms to stress.

          But that is just my non-professional opinion.

          Sorry to hear that you are very heat sensitive. I can certainly understand, as I don't function well when my body gets too warm either.

          Do what you can to stay cool, especially while taking care of your boys.
          Thanks again for your response, I pretty much stay inside until the cool of the late evening and then I take a dip in the pool.

          I will be seeing a new neurologist next week for a second opinion.

          I lead the most stress free life of anyone youíve probably ever met. My husband literally takes care of everything and even brings be coffee in bed every morning. Thatís the only reason why I scoff at the idea of this being stress related.

          Comment


            #6
            Originally posted by Oklasooner View Post
            Thanks again for your response, I pretty much stay inside until the cool of the late evening and then I take a dip in the pool.
            Smart!

            Originally posted by Oklasooner View Post
            I will be seeing a new neurologist next week for a second opinion.
            Please let us know how the appointment goes, if you feel up to it, ok?

            Originally posted by Oklasooner View Post
            I lead the most stress free life of anyone youíve probably ever met. My husband literally takes care of everything and even brings be coffee in bed every morning. Thatís the only reason why I scoff at the idea of this being stress related.
            Good for you! Your hubby sounds like a dear heart.
            PPMS for 22 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              I am amazed that no blood work was ordered Have you had any recently?

              One thing I have learned is that if you go in to a doctor and they feel you are self diagnosing, it is easy for them to dismiss you, thinking that you are anxious and/or a hypochondriac. I had one, whom I no longer see, actually ask me if I got my medical degree from Google.

              For that reason, I never mention a diagnosis, just symptoms/timeline/associated information. I may ask questions that are related, but I never mention a disease or condition, unless I have been given that diagnosis.

              Glad you are getting a 2nd opinion. If the neuro feels it is not a neurological condition, ask what type of doctor does he think you should see next to get answers. Or what timeline would be appropriate for a follow-up if symptoms don't reside.

              Hope you are feeling better. It is frustrating to not have answers, let alone direction for next steps.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Originally posted by pennstater View Post
                I am amazed that no blood work was ordered Have you had any recently?

                One thing I have learned is that if you go in to a doctor and they feel you are self diagnosing, it is easy for them to dismiss you, thinking that you are anxious and/or a hypochondriac. I had one, whom I no longer see, actually ask me if I got my medical degree from Google.

                For that reason, I never mention a diagnosis, just symptoms/timeline/associated information. I may ask questions that are related, but I never mention a disease or condition, unless I have been given that diagnosis.

                Glad you are getting a 2nd opinion. If the neuro feels it is not a neurological condition, ask what type of doctor does he think you should see next to get answers. Or what timeline would be appropriate for a follow-up if symptoms don't reside.

                Hope you are feeling better. It is frustrating to not have answers, let alone direction for next steps.
                I never once mentioned any diagnosis, a friend who has MS only suggested it might be, so I came here to inquire from those who are more inclined to answer honestly.

                I forgot to mention that blood work was indeed taken for some issues like B12, Hypothyroidism and a few other things and they were all ruled out. I do get the feeling he isnít taking me seriously, which is a big reason why I avoid doctors all together. If they canít figure out whatís wrong, they assume itís all in your head.

                Comment


                  #9
                  Originally posted by Oklasooner View Post
                  I never once mentioned any diagnosis, a friend who has MS only suggested it might be, so I came here to inquire from those who are more inclined to answer honestly.

                  I forgot to mention that blood work was indeed taken for some issues like B12, Hypothyroidism and a few other things and they were all ruled out. I do get the feeling he isnít taking me seriously, which is a big reason why I avoid doctors all together. If they canít figure out whatís wrong, they assume itís all in your head.
                  Sorry, didn't mean to infer you went in thinking you had MS. I am glad you are looking for answers, including here! Just anecdotal observations. It is a fine line educating ourselves and questioning without getting some doctors defensive.

                  Glad to hear they did bloodwork. Agree that when they can't find a cause, anxiety and all in your head are what some docs say. Here is hoping your next neuro is up for the challenge and digs deeper.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Originally posted by pennstater View Post
                    Sorry, didn't mean to infer you went in thinking you had MS. I am glad you are looking for answers, including here! Just anecdotal observations. It is a fine line educating ourselves and questioning without getting some doctors defensive.

                    Glad to hear they did bloodwork. Agree that when they can't find a cause, anxiety and all in your head are what some docs say. Here is hoping your next neuro is up for the challenge and digs deeper.
                    Oh youíre fine :-) I thankfully have an amazing primary doctor who knows me well and will let me turn to him when I get frustrated.

                    I would just like to know whatís going on with my body. Yíall have been very kind. Thank you!

                    Comment

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