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The journey for a diagnosis continues!

I just got the preliminary report from the radiologist on my recent MRI (brain with contrast), and great news! I don't have a brain tumor and have never had a stroke! 🤣

But it doesn't seem like there is any evidence of lesions in my brain. Since I know that I'm not crazy or imagining my symptoms, I'm preparing for my follow up with my neurologist. And this time, I'm going to drive the appointment and request the testing that I should have pushed for last March during my appointment.

So I wanted to see if any of you have any recommendations for testing that helped you get your diagnosis. I'm definitely going to demand a full spine and cervical MRI with contrast. After reading about many members noting that cervical lesions were the cause of their numbness, I feel that probably all of my damage is cervical and spine. I don't want a LP but will request it anyway. And the evoked potential. Anything I'm missing from my macabre bucket list?

I appreciate any input you have. I'm writing everything on a concise list, one for the symptoms and one for the testing. I plan to make a copy before the appointment so I can just hand the copy over and we can go bullet point by bullet point.

Thank you in advance! Much love to you all!

  1. you certainly are being a great advocate for yourself in this process. I know that it might not feel like that right now - and likely a bit tiring - but this will serve you so well in getting the answers that you want and need.

    The fact that you're working with your doctor - the best person to give you the best answers to your specific health, symptoms and potential diagnosis - going for the tests, being open to other tests, doing some research, prepping in advance of appointments and connecting with a community of people who get it. I share this because sometimes you can take all of these steps for granted if this is something that you naturally do, but I just wanted to acknowledge that this is the role of a great health advocate.

    We're grateful that you sparked this conversation and are happy to support you on this road to a diagnosis/answers.

    One resource that comes to mind is this article about how to prep for your neurologist appointment

    I'm sure that others will join the conversation as well. If you feel comfortable doing so, please keep us posted on how everything goes.
    Alene, Moderator

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