Lived Experience Forum

[Patient]

Hey, 

I'm not sure if this is really the right place for me, but I'm not really sure where I fit in within the forum world so I thought I'd give it a shot, if anyone has other suggestions for me please let me know though.

Next year will mark 10 years since I saw the first doctor, for unexplained and involuntary movements. Years of neurologists and being told nothing other than 'you will probably grow out of it' ended with nothing. So I tried again once I was an adult, and again went through all the tests and got new medications. After 3 years of medications with horrible side effects something is finally working, I can hold a glass, and tolerate noise and light. Not quite well enough for me to continue my career path though, or for people not to notice. I had to make the decision to leave the field of work and study I love. I have to explain myself constantly.

The results of my final shot at a proper diagnosis (sure I have diagnoses but they basically just translate to 'this is what it looks like but we don't what it actually is') came in 2 weeks ago. Yet again nothing, just nothing. I had told everyone this is what I was expecting, that I had accepted it... yeah that wasn't exactly true. My current coping strategy seems to be try not to think about it. A diagnosis already felt like a consolation prize for everything I have struggled through, and yet I didn't even get that. It just makes it all hurt even more. It's like none of it was worth it, and no one around me can understand the feeling. 

So yeah maybe I just needed to vent, but it feels like my life has been collapsing in on itself, and I don't feel like crying infront of anyone anymore than I already have.

[tyme]

Hugs @Patient .

I'm so so sorry to hear this has been going on for so many years. It sounds so difficult especially since it has affected pretty much every aspect of one's life. 

Whilst we may not be able to help you medically, we can offer you an ear to listen, a shoulder to cry on, and a heart to understand.

Please do not let go of hope. I cannot begin to even fathom what you may be going through, but I'm sitting with you now.

Hugs @Patient . 

[NatureLover]

Hi and welcome, @Patient ...it sounds awful, what you are suffering 😢

I'm so glad you can now hold a glass and tolerate noise and light. But it sounds very frustrating, having no diagnosis after 10 years. 😞

We are here to listen. 

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