looking for someone who has CM and Sjogrens syndrome, I also have an aneurysm

[fotogrl63]

In January 2013 I was finally diagnosed after many years of suffering. The MRI showed a brain aneurysm, and also Chiari Malformation.
My lab work showed ana positive, with ss-b.
With more lab work I was told it is Sjogrens syndrome, this gives light to the feeling of drying up!
I have hearing loss and ringing 24/7, memory retention issues, balance issues, neck pain, feeling like bad hang over with out ever drinking. Numbness and tingling in arms and legs, stabbing pain behind one eye, racing or weird heartbeat that causes me to caugh. Chronic fatigue and weakness! Any one else been told both CM and
Sjogrens syndrome?  Aneurysm ?

[fotogrl63]

Yes it is Dr. Ellenbogen,  I've read good things about him and looks like I may not get an appt. until mid May but thats ok with me. Thanks for your help. I will update as I find out info.

[selmaS]

  Is that a Dr Ellenbogen? I know he is up in that area, not sure of the toen or hospital he is affiliated with.....we had several members see him.

Keep us posted on how things go once u meet : )

[fotogrl63]

I don't think the NS I've been seeing is a Chiari specialist,  I found one in the Seattle Wa. area I will be getting a referal thru my pcp so I can get an appt. to see dr. at Harborview Medical, or UW he is at both locations as well as Seattle Childrens

[fotogrl63]

I have contacted Harborview, they have a Chiari specialist who I will be trying to have my pcp refer me to see.

[selmaS]

  Is this NS a Chiari specialist? U will want the Dr to specialize in Chiari and related conditions, a reg NS will not know the connection to related conditions and how that can affect how u feel and heal post op should u be considered a surgical candidate.

[fotogrl63]

I have been to a neurosurgeon a couple of visits, and will be seeing him again on Tues the 9th,

[selmaS]

  Hi and welcome to the Chiari forum.

I know we have had a few members say they had sjogrens along with Chiari as  well as a few with aneurysms....if u use the search this community feature u will be able to read an older thread on the topics.....

  Have u been to a Chiari specialist yet? We do have a list of Drs for u to use as a tool to research Drs, it is not a referral or endorsement, but helps u get started on checking out Drs that have treated a member here for Chiari.

Just know u can have several things going on or even get a mis dx until u have a Chiari specialist take a look to see if it is the Chiari causing ne of it.....some issues can be resolved while others r underlying and will take separate treatments.