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1st Neuro Appt in 3 days...scared and frustrated

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    1st Neuro Appt in 3 days...scared and frustrated

    HI everyone. It has been very heart warming to find like wise people to talk with!!!! I have been having symptoms for a couple of years now but have always associated them with other causes.

    First would be random numbness in the legs. This numbness comes and goes. At the moment, my left hip area and right great toe have been numb for several weeks. I also have numbness of the right knee that is transient. I have always assumed this was due to my back pain...(maybe a pinched nerve)

    Second symptom consists of periods of time of not being able to urinate and having to cath myself. This began about 2 years ago after a total hysterectomy. I assumed this was because my bladder had "fallen out of place"

    In Jan. I became severely ill from "asthma" symptoms...mainly shortness of breath, especially on movement...like walking, or daily activities.

    While in the hospital, I began to have the urinary symptoms and told the nurse, who in turn got me a urology consult. The urologist comes in and says "so you have MS?"...I was stunned....I said No, I just think my bladder "fell". He checked the position of my bladder and said it was fine. Also scoped my bladder with no abnormalities.

    So I went to a new primary care after discharge from he hospital. (have never had insurance so I never had a regular dr) I was telling this new dr my symptoms and since I am having difficulty urinating and numbness he is sending me to the neurologist.

    I am 31 years old and in looking back have several other symptoms such as severe fatigue and pretty noticeable word finding problems. Also...I had a MRI of my lumbar due to the pain and numbness, which showed nothing but arthritis. I understand most or all lesions are in the thoracic and above.

    Im frustrated bc despite all these symptoms may PCP also suggested I may just be depressed. Sure, ill admit im not Miss Happy go Lucky...but I highly doubt all these are all from depression. Maybe fatigue, but not being able to urinate?

    After reading about people being blown off at appt, Im worried now about not being heard. Im praying for a great outcome but at the same time I NEED SOME ANSWERS!!!

    Thanks for reading and prayers and thoughts to all!!

    #2
    I just wanted to bop in and say HI. I have my first neuro appt tomorrow (Monday) and I share your fear about not being heard. I've been keeping a journal of all of my symptoms and I'm trying to organize it tonight to be less than a page. I'm worried that I'll forget something or say something wrong or that he just won't listen or believe me.

    Here's to an interesting week for both of us!
    Not diagnosed, but symptoms include: vertigo, fogginess, numbness, tingling, internal shaking, zapping pains, tight calf and knee, etc. etc. etc. First neuro appt. on 03/04/13.

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      #3
      Hi, guess we will see this week, I hope!!

      I just want an answer...even if I have to accept that its all in my head...which I HIGHLY doubt..lol

      Good luck and keep us posted!

      Comment


        #4
        Kenandcamsmom: Don't be afraid of you neuro appointment.
        With your age and symptoms, you will be taken seriously. For additional help, things to write down are:

        1. Exacerbations, or episodes of numbness or problems urinating that last for >24 hours. Anything <24 hours are not considered a true exacerbation and will be dismissed.

        2. You can tell them about the numbness off and on, but 1 minute stuff tends to irritate them.

        3. Be sure to try and put everything in a timeline. You can estimate. Like when it all first started, when a new exacerbation began, when it ended (you felt better), and when another one started.

        4. Remember, exacerbations with MS are about a month apart. No sooner.

        Good luck at your appointment. Don't leave anything out. Like tightness in your legs, weakness anywhere, numbness anywhere. Bring your records from your urologist or GYN whoever is treating your urinary hesitancy and self cathing.

        You will probably go for an MRI after a thorough neurological examination.

        Good luck, and no worries.
        Lisa
        Moderation Team
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #5
          Hi, Kenandcamsmom,

          I got back from my appt and I am happy to report to you, I was completely taken seriously! Never did I feel like he doubted me or made me feel like I was an idiot. I brought in a list of my symptoms in case he questioned me and I forgot the details, but I didn't need it at all.

          I hope your appt goes as well as mine did and I hope your doctor listens to you. Best of luck to you, please keep us updated.

          Katy
          Not diagnosed, but symptoms include: vertigo, fogginess, numbness, tingling, internal shaking, zapping pains, tight calf and knee, etc. etc. etc. First neuro appt. on 03/04/13.

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