Episodic Ataxia

So as I wait to see a neurologist at the Chiari Institute (at the end of this month!) I still decided to meet with the neurologist here in Philly... he in no way thinks I have Chiari, but said he is interested in seeing the TCI thinks - so it was nice he was somewhat open to a different/new opinion.

Anyways he thinks that I might have Episodic Ataxia... anyone else have this or been told they have this? I am supposed to get genetic testing done as well as a 24 hr EEG and Neurophycological testing. He also wants to get an MRI of Cervical Spine, but I am getting that done at TCI so I figured I would just wait till then.

Just wondering what your opinions/experiences with Ataxia are... THANKS!

[selmaS]

Hi...episodic ataxia is a Autonomic Dysfunction...which is what POTS is, and some with chiari do have POTS and other  autonomic  issues.

May I ask who u saw in Philly?...I also saw a dr down there, but was told I did have chiari.....

Not sure if that answers ur question or not.....

Who r u seeing at TCI??

"selma"

[CB1122]

Hey Selma!

So you think episodic ataxia could be just part of my problem...?

I saw Dr. Z - his name is long and so difficult that no one at Jefferson uses his full name - lol. He specializes in epilepsy - the ENT I was seeing sent me to him b/c he thought maybe I was having seizures. But Dr. Z said I was not having seizures - which is good!

I am going up to TCI on the 29th and having all the MRIs and Scans and what not done... then later in the afternoon meeting with my nurse: Lisa and then a neurologist that I don't know the name of.

I am anxious to hear what they think.... its weird trying to diagnose myself... and it kinda freaked me out that I was even a candidate to be evaluated there... its almost like I just expected to be turned away...

[selmaS]

Well, ur MRI's must show something....not everyone is seen at TCI...and even those that r, not all r surgical candidates.

I pray it all goes well for u....I had my surgery at TCI and was very happy with my drs there.

It is possible that u could have this issue in addition to chiari.....

In Philly I went to Unnv of Penn-.....I am not familiar with the drs at Jefferson.

Try to relax...they r very nice up at TCI...and the radiologist is right there, so if u r having more MRI's done u do not  have far to go.

Keep us posted : )

"selma"