Ataxia and EDS

[pennypoop]

I have an unknown type of ataxia, thought to be genetic. I have many gastrointestinal problems and autoimmune problems with heart racing and body slowness. Many of my problems sound much like EDS symptoms. My neice has type 3 EDS. is it possible for me to have both EDS and ataxia, and can EDS cause neurological problems?

[Hazelnut74]

I have been wondering exactly the same thing. So many symptoms are the same.

[EOLHPC]

You may know about this source of info already, but, if you don't, here is a link to my fav source of info on this subject. I'm globally Hypermobility of the ED type with infant onset systemic lupus as my primary + a chronic immunodeficiency which immunology is investigating currently. I too have chronic neurological symptoms.

Hypermobility Syndromes Association

hypermobility.org/

The HMSA website provides help and advice across the spectrum of problems ... The Hypermobility Syndromes Association (HMSA)is a UK charity but we are ...

[pennypoop in reply to EOLHPC]

Thanks will look

[New47]

It certainly could be. I have EDS and Ataxia. Good Luck as most GPs still haven’t heard of Ehlers-Danlos but you need to understand there is no cure for type 3 you have inherited it for life. But try not to worry about i

[Jay66 in reply to New47]

Hi New47. This post is 3 years old - it is a real problem with HealthUnlocked (I think) that it does not mark posts which are old. There has been no activity from pennypoop for 3 years either. I am sending an email to them to ask for old posts to be flagged.

[New47]

Yes I was born with Ataxia but not one consultant has asked me why! I have a tiny Arachnoid cyst which is nothing to worry about but if it’s in the brain it can cause Ataxia

[mjm0014]

I was recently Dx w/ hypermobility EDS. Currently waiting for genetic testing to rule out those that can be IDed or ruled out.

I am completing a number of cardio tests as a part of being Dx with POTs and other EDS related conditions. As a part of that, one of the tests show "a significant central vestibular dysfunction. Defective pursuits denotes a CNS lesion. Bilateral or symmetric defective pursuits imply dysfunction of cerebellum, striate cortex, or brainstem. VOR asymmetry suggests central dysfunction ipsilateral the the direction of asymmetry".

When googling to try to understand what this means, terms like ischemic stroke, Parkinsons, or ataxia. My paternal uncle died of multiple system ataxia at 59. He started showing signs at 50.

Ive never heard of ataxia before in my life. And it seems more than coincidental that they are coming up appearing related. It could also be he had undiagnosed EDS. Im the first in my family line to be diagnosed and suspect a few other relative also have it. I wonder if the "envirnomental" in ataxia (supposedly a very rare disease) are coming up as potentially related. And although my Uncle was diagnosed by the Mayo clinic, it could be the got the "environmental" part wrong.