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Your MS Diagnosis

How were you diagnosed with MS? Share here.

  1. Numbness from the waist down was the symptom that at long last resulted in a referral to a neurologist. Blood tests and MRI's were used to diagnose my MS.

    1. wow that had to be incredibly scary to experience that symptom without knowing the cause. It still blows my mind that there's no single tests that can definitively diagnosis MS. - Alene, moderator

    2. it sounds like you had quite an abrupt start to MS. I hope that you've been managing well since. - Alene, moderator

  2. Oh my goodness, that is a tough one. There were so many times when I felt like my legs were like concrete or if felt like I was trying to walk through snow that was up to my waist. Then, there would be times with tingling or numbness, dropping things more often, falling more often, so many different symptoms over the years. Kept telling the doctor the same symptoms I was going through over and over. Eventually, she sent me to an neurologist, who gave me an EMG, which was inconclusive. Finally, I got fed up with it and got a second opinion and went to another neurologist. That doctor knew right away that there was something wrong with me and sent me off for my first MRI. He was hoping that my husband was with me, but no, I was all alone. He showed me my MRI and there were white dots all over my brain and neck which he said was MS and I screamed and cried all the way home on the buses. I was so shocked and upset. I called my last surviving aunt and asked her if we had MS in the family and she said yes and said one of her daughters is in a wheelchair and she had some nephews that MS too. I was furious. My mother took that dirty secret to her grave.

    Tell us about your experience?

    1. Hi Carol, I am new to this discussion. My sister was diagnosed over 10 years ago but doesn't have an lesions on her brain. I have seen her get worse and worse over the years because all the medicine she has been taking or the steroid treatments she was given are not working so they don't know what she has. She has been to so many neurologists over the years they just don't have any answers. They are not even sure its MS its like they given up on her. The last dr had her have a baclofen pump inserted near her belly. I feel so bad for her. I feel like she has lost hope. What if its not MS. She can barely drive anymore only short distances. I just feel lost for her.

      1. Sooooo..... I am probably one of the oldest MS people on the planet. LOL I was diagnosed when I was 28 (but believe my symptoms began as a teen) and now am 69. My first serious symptom was retrobulbar neuritis which I developed while pregnant with my son. Thinking it was caused by my pregnancy I just chalked it up to that, but I began to worry when I still had visual issues after his birth. My eye doctor recognized it immediately, but only put me on Prednisone without saying much else. It wasn't until my son was a year old and I had the neuritis return that he sent me to a neurologist. Since there were no MRIs way back then I was sent to the MS Treatment Center in Univ of Med and Dentistry of NJ and had a confirmed diagnosis by Dr. Cook.
        He was a leading expert on MS at the time so I knew he was being truthful.
        Jumping ahead to 1990 I finally had an MRI and was told I have 12 lesions on my brain, brainstem and upper spine. Joy. My journey with MS has been a long one and I am now tired of dealing with MyShadow; consequently, I am not as concerned for my symptoms as before. As to my life with MS, I have had relapsing/remitting most of my life, with cognitive issues my biggest problem - poor judgment, major disconnect between thought process and verbalization, making bad decisions, saying inappropriate things in a conversation, and etc. And of course, my MS gut, which has caused me much trouble over the years AND lack of coordination and balance has made my life interesting, if not frustrating. So, I realize My MS is not Your MS, but I would like to offer encouragement to those newly diagnosed that you can have a long life and the way to survive is to develop YOURSELF and have confidence. I like to think we were chosen for this horror because we are strong, inteligent people who face life head-on. To do otherwise defeats the purpose.

        1. That's wonderful to hear! - Lori (Team Member)

        2. I learned how to walk in PT THREE SEPARATE times, and the third time the therapist taught me to curtsey and that complex footwork has saved me from failing many times!

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