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Update, 18 months later

Hi all, sharing in case it should help other :slight_smile:

Saw cardiologist last week who agrees its Neurological rather than because of my heart condition but will do an Ablation to be on the safe side. 2 of the genetic tests have come back from Newcastle via Neurologist for mitochondria disease and has come back negative, thank heavens. Then saw ENT this week who agrees my balance is bad, hearing now gone all together in one ear and now loosing hearing in the other ear. What has got him curious is my right ear inside and out is completely numb. ( along with lots of numb patches everywhere). Unable to do some of balance tests due to weakness in legs. So having a further MRI to see what’s happening and said if this comes back clear there are other tests he can do to find out what’s wrong with my balance. The wonderful Heamotoligist who has orchestrated all this for me is seeing me in January to round up all investigation s to find out what is happening with the hope he can give it a name, treat and slow the progression down in my younger sister and one of my daughters.

I feel I am making progress, but I am getting tiered.

Good luck, to all of you!:heart::heart::heart:

Thank you xx

Hi Poppyseed…I love your name and avatar!

Sending you my best.

luv Pollx

Thanks Poll x