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Positive MRIs but no occipital bands in CSF.

  • By DanielleInOhio

    I’ve been struggling with neurological symptoms on/off for about ten years, which have intensified radically over the last year. Ten years ago, they found 2 lesions in the frontal lobe, and more recent scans show about 20 lesions throughout the brain. I have been fighting for some kind of diagnosis, but to me the symptoms fit MS perfectly.

    Early symptoms were mostly dizziness, pain, and mild cognitive issues. After months of testing with no diagnosis, I got fed up and wrote it off to stress. It came and went over the years, but was rarely debilitating.

    Fast forward to last July, when I was working under extreme stress. I ended up in the ER with my entire right side numb and tingling. After ruling out a stroke, they dismissed it as anxiety.

    I requested an MRI from my primary care doc (and had to fight for it) and they discovered the 20+ lesions. That was in addition to numbness and spasms in my legs, headaches, shooting nerve pain in the legs, dizziness, blurred vision, spots in vision, frequent night urination, and severe fatigue and cognitive issues.

    Despite all of those symptoms and scans, two neurologists simply dismissed the diagnosis. They also didn’t give me any other possible diagnosis – just treated me like I’m dramatic.

    They have ruled out Lyme disease, sleep apnea, thyroid disorders, and everything else they could think of!

    It has gotten so bad, muscle cramps in my legs have made it difficult to walk and fatigue has forced me to leave work several times.

    I don’t want a diagnosis of MS. But, it fits. My mother also suffered from the disorder and I’m watching my symptoms mimic hers.

    How do I get doctors to take me seriously? I feel like I have to decline to the point I’m hospitalized before they will listen.

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  • By Shirley

    Danielle,
    Don’t give up! I had to wait 2 years and 4 months for my diagnosis. Sometimes I’m amazed to hear of others who get a diagnosis within a month, but then I realize that ruling out every other possibility was important for me, and when I finally got my diagnosis I was GLAD. I’m sure you understand after watching your mother suffering with MS. There are so many new treatments out there now, and I’ve heard several neurologists say they will start a patient on one of the therapies if they only suspect the diagnosis. Try to get involved with an MS group. It should be a big help to you, and see about getting to a doctor who does care. There are many out there. Asking around at an MS group will help there, too. I’m praying for you.

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    • By DanielleInOhio

      Thank you so much! I’ve been struggling to talk about it with anyone because they don’t understand or look at me like I’m being dramatic. If they only knew that I typically down play symptoms and don’t ever explain how much I’m struggling. Thank you so much for the understanding and encouragement. It means the world! ❤️

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  • By Donna Steigleder Moderator

    @danielleinohio I’m so sorry you’re having so much difficulty. A couple of ideas come to mind. First, not every neurologist is up to speed on the latest regarding MS. Do you know if the two you saw were active in treating MS patients as a specialist in the condition? It’s one thing to “know” about it (i.e., know it exists from a textbook) and another to attend conferences and keep up with research. If your doctors don’t fall into the second group, you might need to find one who does. Which is my second thought… Contact your local NMSS. Ask them who in your area has the best reputation for treating MS and get an appointment with them. Here’s some detail on how many different ways MS can be diagnosed. https://multiplesclerosis.net/diagnosis/ It shows that CSF is not always positive. I hope this helps.

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    • By DanielleInOhio

      Thank you so much for this! It is exactly what I needed. Despite all of the symptoms, they are writing me off before ever doing an evoked potentials test. I have so many obvious nerve issues (twitches, spasms, spontaneous limb movement) that I imagine the test will show something. I can’t thank you enough!!

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    • By vincenzo

      Sounds like you have great advice here, finding the best doctor is almost as difficult as getting the correct diagnosis. I fall into the minority of MS’rs who were diagnosed quickly. I do know however after suffering a relapse while on treatment how important it is to be on the most effective treatment to help keep the effects of MS at bay. Best advice is to do all you can to find a great MA specialist and go from there. All the best.

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  • By EmilyAnuhea

    @danielleinohio, If you haven’t yet, get a copy of the MRI report from the radiologist to see what kind of verbage they are using to describe your lesions-it may either confirm what you suspect, or lead you to investigate other options. Also, try to get your current MRI compared it to the MRI you had done 10 years ago-although 10 years is a bit long to hold on to medical records, especially with the switch to electronic records. Unless you have a copy you can provide them? Wishing you the best!

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  • By Densz

    I am new to this site as I have recently been diagnosed with ms. I have been trying to get a diagnosis and after 9 years of testing and symptoms, finally received one. My brain mris showed lesions and black holes. My lumbar puncture came back normal. My symptoms started with my right side going paralyzed for about 30 minutes, muscle spasms and pain, unrelenting fatigue, visual field deficits, memory issues, numbness to name a few symptoms. This last brain mri that was done with 3 Tesla flair, the radiologist wrote that the lesions were clinically consistent with the diagnosis of ms. My symptoms have gotten slightly worse. I kept asking is it or isn’t it ms. I am relieved that I finally got a diagnosis
    I started treatment 2 days ago of glatimer acetate injection 3 times a week. So far so good. Be persistent. Sometimes neuros just don’t know, as I wasn’t progressing rapidly. Good luck and I hope you get an answer.

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    • By Lisa Emrich Moderator

      @densz, Thank you for sharing.

      My own diagnosis took more than 5 years from first major attack (complete blindness in one eye for 3.5 months) to later attacks that prompted further testing. Even then, we had to wait for MRIs to show changes (this was back in 2005 when there was different diagnosis criteria). I hope that the glatimer acetate works well for you.

      You are absolutely right! Be persistent. And hopefully you will find useful answer that will lead to appropriate treatment.

      Best wishes,
      Lisa Emrich

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