caret icon Back to all discussions

What was the most challenging or frustrating part of your diagnosis?

  1. Accepting that you have it

    1. Hi thank you for sharing! Adjusting to life with MS and accepting the changes that come with that diagnosis is hard. Please know that you are not alone! Thank you for being a part of the community. Best, Christine, Team Member

    2. I found out through my patient portal. All they told me initially was that it's a demylenating disease. Then they just shoved me out the door. No one offered to educate me on anything. Everything I know now I've learned on my own.

  2. Waiting for the diagnosis. I was scared I had a brain tumor due to family history.

    1. Trying to get a diagnosis. I have been in limbo now since the 90's, when the Military Dr's started telling me I "might" have MS. I went to a neuro in 2002, only to be told by him that because HE didn't diagnose me, I didn't have MS.
      That is where things have stayed since then. Due to lack of health insurance, the economy went down and I got laid off.
      I still live with the symptoms, and manage them -without any Dx or Rx. All of my management as been through diet, supplements and being mindful of the MS triggers. I may never get a Dx. 🙁

      1. Good grief, ! I don't blame you for feeling frustrated! That is a long time to go without a proper diagnosis.

        I am sorry the economy and lack of health insurance have made it impossible for you to get a diagnosis. I hope the new year brings some changes and allows you to get the medical care you need.

        Thank you for sharing! Best, Erin, Team Member.

    2. Getting past the depression. I was terrified of what I didn't know and what I suddenly couldn't do.

      Please read our rules before posting.