Finally gotten my diagnosis !
Neuropathy Ataxia Retinopathy Pigmentosa = NARP type
Sheffield Professor Marios
MRI scans blood cultures and nerve n muscle conduction tests
Have NARP lock stock and barrel
Plus am Diabetic type 1
My legs n arms are really tiny and am wasting away via my muscles
Have smaller legs n arms than a child
Was told whilst having my muscle biopsies done .
Exhausted easily daily !!
Even just doing one small thing a day
With my cousin like going a short walk to grab a coffee locally
So mito chondrial type =highly possible n most probably a ( rare typed one)
Am being tested for the correct type of this .
My ataxia plus the NARP typed was caused by me contracting German measles .
Infection caused... As a baby !
I started at 50years old with my symptoms
Lack of balance co -ordination extreme tiredness and worsening ears n eyes
Especially walking gait n balance is affected .
Plus my swallowing n speech skills has gradually become problematic.
Any drops or slopes or dips n steps
My brain simply can't self recognise nor brake or adjust to the environment changes .
I always need either my 4 wheel rollator or a persons arms to support me .
I am scared in the shower even though I sit and ensure someone else
Is at home whilst I use the shower
I hate the ataxia whilst having a shower
I have shower seat n grab rails etc
Balance n brain is wobbly n unstable etc
Scared of slipping or hurting myself !
Weight of clothes n coats is a concern
I need and prefer the "lighter" the clothes weight etc = the better for my bones .
Pain in my limbs is always with a painful prescence in them - especially my legs n feet !
Worse pains during night time hours.
Have to ensure am covered with pain relief or can't sleep well at all .
All sensory needs decreasing n worsening over time =last 5 years .
Am 55 this year 😳
It's a long road to face and cope with.
Progressive NARP and every damn day !!!
Just wish it would or could give me a break 😢
It's a lot to cope with each and every day.
Has anyone any help or tips etc ??