Hi, I'm Sherry

This is the first time sherry has posted — let’s welcome them to our community!

sherry

2d

Hi, my name is Sherry and I am primary caregiver for my 43 year old daughter and her 14 and 6 1/2 year old sons along with my husband. My daughter was recently diagnosed with spinocerebellar ataxia after 6 years of symptoms… Six weeks after her last child was born she began stuttering having balance issues , swallowing problems and complaining that her eyesight wasn’t right, then began falling which led to an MRI that was normal, was then referred to a neurologist who said all her symptoms didn’t fit into one box and so diagnosed her with conversion disorder and referred her to a psychiatrist. After having many tests and seeing many neurologist who also said conversion disorder she did lots of research and learned that all her symptoms most certainly do fit into the ataxia box. She does have nystagmus as a result of ataxia We live in NC and she is now seeing a motion disorder neurologist at Duke who said she does have ataxia .She has had genetic testing with no conclusion of inheriting this. The only treatment she has had are PT,OT and speech therapy To my knowledge there are no ataxia specialists any where close to us nor any clinical trials. I Would like input from any and all to help my daughter and am glad to whatever input I can offer to anyone suffering with this awful thing called ataxia

4 Likes

Welcome to the site.

1 Like

Hi Sherry, welcome🙂
You won’t be surprised to find your daughter is far from being alone in having had difficulty getting a diagnosis. Many of us have initially been misdiagnosed because the symptoms we experience can ‘overlap’ other Neurological diseases.
Sometimes the cause is genetic, sometimes other factors have triggered ‘Acquired Ataxia’…and sometimes the cause remains a mystery.
But the fact remains that we all cope with very similar symptoms, but can vary in severity and progression depending on the individual.
:slightly_smiling_face:From what you say, it seems your daughter has had good care and investigation. At the moment there is no cure for any of the Ataxias, but there are medications that could alleviate symptoms.
If she finds she experiences double vision, make an appointment with a NeuroOpthamologist. Eye problems are common, and this symptom can be treated.
:slightly_smiling_face: You can find reliable information of all kinds on www.ataxia.org…and info re trials on www.clinicaltrial.gov

:slightly_smiling_face: I’ve had symptoms since the mid 1990s, starting off with worrying poor balance and eye problems. This progressed steadily to having falls, and eventually I was diagnosed with Idiopathic (cause unknown) Cerebellar Ataxia in 2012. I can still walk but I need to use a walking stick for safety.
Please feel free to ask us anything, nothing is too trivial…There’s bound to be someone here who has experienced, or heard of similar :slightly_smiling_face:

Best wishes🙂

1 Like