Intro & Tests to request?

General
1

Hello!

I am new here. I went to ER Thursday due to gait/balance issues which rendered me unable to get work done... I've been in denial, however my teens' urgings pushed me over the edge to go in - finally!

The ER doc gave me a CT scan [neg for tumors], blood work [blood sugar normal to slightly hypo - 80], liver tested out fine. Left with a reference sheet which said ATAXIA and referrals to my primary and a neurologist.

My symptoms are the "ataxic gait" as described here: http://stanfordmedicine25.stanford.edu/the25/gait.html

plus no appetite & periods erratic for the past 9 months or so [I'm 46, so I'm assuming peri-menopausal]

I'm hoping this is just vitamin/mineral deficiencies, or hormonal... ER doc said the neurologist will run a MRI and the ER doc's line of questioning lined up with a MS diagnosis. He said ataxia is a symptom, so didn't seem to see Ataxia as a diagnosis - but then again he didn't say much, other than the tests he ran were all good so that's the beginning of the process of elimination.

I'm in the Twin Cities, so I'll make an appointment at the University of Minnesota's Ataxia Clinic if I only get ambiguous answers from my primary clinic tomorrow, and then the neurologist in 2 weeks.

So... what tests should I insist upon at my general practitioner appointment tomorrow?

Thanks in advance!

/Susan

BTW - I found the Ataxia Facebook group a couple months back, and I've been lurking - feeling scared! When I saw ATAXIA in big bold letters on the sheet the ER doc gave me my heart skipped a beat - like "Okay, that isn't my imagination, this is real."

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Welcome Susan,a wise choice going to ER and a bit of a shock to hear((((( Ataxia )))) as a possibility..We all know that feeling o' so well..Don't we gang!Your GP like most,have minor rather basic tests for Ataxia types.So my guess is you'll be referred to Neuro for a zillion tests to be done because the complexities of this rare disease are such that you could waiting long periods of time for answers..So chin up,stay with us at LWA and together we'll make life,better..

Your friend,Ozzy


3

Thank you Ozzy!

I'm actually hoping, and praying, I dodge this bullet - by learning it's treatable vit/min deficiencies and/or hormonal.

Time will tell...

4

"A Zillion Tests" is right! My husband had an MRI and assorted vitamin, thyroid, copper, gluten, iron... You name it, along with the SCAs that are tested in our country. We had to wait months for the SCA tests to come back due to a lab glitch and we hoped for anything but that to be positive.

Good luck. I hope you get lucky and find a treatable answer. The waiting is tough. You have come to the right place for information!

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Thank you Eire!