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    Need some direction

    I am a 57 year old. I went to see a neurologist to find out why I had Bell's Palsy on left side of my face in 2015 and got it on my right side this past January. It's always very painful and takes months to go away. They did an MRI with contrast. After looking at the MRI the neurologist nurse practitioner (you have to wait months to see an actual neurologist) asked if anyone in my family ever had MS. I told her my sister does and my grandmother had it decades ago.

    She showed me all the white matter on the MRI and said it has the same patterns as MS. Also saw white dots all over which she said (and radiologists report said) were lacunar strokes. Went home very shocked and upset. That was in March. Since then to try to confirm MS they did a lumber punch, a neck and upper spine MRI (MRI's were with and without contrast) and every blood test known to man. The only suspicious matter was in the brain.

    She now says it could be MS or maybe not and that the lacunar strokes may not even be strokes, they could be MS. The only thing we can do is wait for 6 months and do another MRI she said. I'm worried I could have more strokes, if they even are strokes and that we are delaying treatment for MS. Anyone been through something similar with trying to get diagnosed?

    ** 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
    Originally posted by PaintHeaven View Post
    I am a 57 year old. I went to see a neurologist to find out why I had Bell's Palsy on left side of my face in 2015 and got it on my right side this past January. It's always very painful and takes months to go away. They did an MRI with contrast. After looking at the MRI the neurologist nurse practitioner (you have to wait months to see an actual neurologist) asked if anyone in my family ever had MS. I told her my sister does and my grandmother had it decades ago.

    She showed me all the white matter on the MRI and said it has the same patterns as MS. Also saw white dots all over which she said (and radiologists report said) were lacunar strokes. Went home very shocked and upset. That was in March. Since then to try to confirm MS they did a lumber punch, a neck and upper spine MRI (MRI's were with and without contrast) and every blood test known to man. The only suspicious matter was in the brain.

    She now says it could be MS or maybe not and that the lacunar strokes may not even be strokes, they could be MS. The only thing we can do is wait for 6 months and do another MRI she said. I'm worried I could have more strokes, if they even are strokes and that we are delaying treatment for MS. Anyone been through something similar with trying to get diagnosed?

    ** 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. **
    Hi PaintHeaven

    If you could get in to see an MS specialist, you would be seen by an expert that really knows what MS lesions look like, and how they differ from other lesions.

    Are there any MS Clinics in your area?

    I wonder if your neuro would be willing to refer you to an MS specialist for a second opinion.

    I was dx'd with MS by my neurologist, but he referred me to the Mellen Center for MS (Cleveland Clinic) for confirmation that it was Primary Progressive.

    MS can be tricky to diagnose sometimes.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Thank you.

      Thank you. I don't know of any MS clinic here in Wisconsin. I could ask Neuroscience who I go to if they know of any. They claim that they have neurologists who specialize in MS but it's not really a specific clinic for it.

      Originally posted by KoKo View Post
      Hi PaintHeaven

      If you could get in to see an MS specialist, you would be seen by an expert that really knows what MS lesions look like, and how they differ from other lesions.

      Are there any MS Clinics in your area?

      I wonder if your neuro would be willing to refer you to an MS specialist for a second opinion.

      I was dx'd with MS by my neurologist, but he referred me to the Mellen Center for MS (Cleveland Clinic) for confirmation that it was Primary Progressive.

      MS can be tricky to diagnose sometimes.

      Take Care

      Comment


        #4
        Originally posted by PaintHeaven View Post
        ...

        She now says it could be MS or maybe not and that the lacunar strokes may not even be strokes, they could be MS. The only thing we can do is wait for 6 months and do another MRI she said. I'm worried I could have more strokes, if they even are strokes and that we are delaying treatment for MS. Anyone been through something similar with trying to get diagnosed?
        I wish my story was more hopeful. Not everyone has such a long time in limbo as I did.

        My MS initially presented with stroke-like symptoms. I lost the use of my left side, and was initially diagnosed as having had a "probable stroke". In retrospect, it had been my first MS flare. Two or three months later, I had a second flare, with totally different symptoms (repeated fainting, manic symptoms, psychosis -- very atypical for MS). My neurologist was able, at the time, to rule out that my initial symptoms had been a stroke and began a battery of tests.

        To make a long story short, it was two flares and almost two years later that I was finally diagnosed with MS and treatment was begun. Sometimes, even with specialists, including MS Specialists, an accurate MS diagnosis can be elusive. I spent 2 weeks at Mayo Clinic, with multiple tests every day lots of various specialists and it was still more than a year following that before my local neuro diagnosed me with MS.
        ~ 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.

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