It is a long way to diagnosis

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I first showed sings and had pain of a musculoskeletal nature when I was about 6 or 7 years old. I have been through an A to Z of incorrect diagnoses and treatments of little value and some damage until I wa 64 years old and accidentally got referred to a correct specialist nuerologist who connected the dots and got it correct. I think the treatment still needs a bit of tweeking to get correct but I am hopeful about that.

Over that very traumatic and bumpy journey I have had to learn to be my own best advocate. I have learnt perseverance and resiliance, I have learnt to question doctors and ask why, why, and why. I ask what do you expect to happen from this treatment or that and what happens without it.

I have learnt never to accept second best for myself. I think because I have a vested interest in my body and my feelings I have an obligation to do that.

I have learnt to think outside the box. I have learnt to be gracious and kind.

I have learnt that no matter how bad seems seem to me there is another person in a worse position. I will never surrender. I am a warrior princess.!

The journey continues, the learning continues. Stay tuned.