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Update on my diagnosis journey

Hi all, hope you are all as well as can be. I now have my appointment to discuss my brain and spine MRI in January. In total it will have been a 3 year journey in March 2024. 3 years of being passed around, 3 years of being told it's just anxiety or it's PPPD or that it will just go away and 3 years of being assertive and determined to find the real cause for my symptoms. Some may think that getting an appointment like this over the festive period might be a little anxiety inducing but to be honest as an autistic adult I like having a date so not knowing when an appointment will be is worse. In my current state I have good periods and bad periods. My best is being able to walk from one room to another and be able to see fairly well with small amounts of my numbness. My worst is barely being able to keep my eyes open while in a wheelchair. But I've remained positive and filled my waking hours with the things I love and the people I love. As my vision became worse I filled my home with music, as my mobility worsened I started to use a wheelchair proudly, as I became more exhausted I treated myself to rest and relaxation and as time got tough mentally I tried my best to focus on the positives and use diversionary activities. Hopefully some answers and some support will be heading my way in the new year. Have a great holiday period whatever you believe in and whatever you may be doing. Another update due in mid January.

It sounds like a long journey. Not fun at all. Being diagnosed can be a double edged sword. There can be a feeling of relief after a long period of uncertainty. Followed by a new reality. We are here 🤗.


I’m sorry you’ve had this wait . It really was the worst part for me too :( I get the impression you will actually just get relief and clarity from a diagnosis. It makes me wonder how others get diagnosed so fast! Merry Christmas 🎄 x