RE: NEW TO THE GROUP AND NEED ADVICE

[Guest guest]

Hi, Sandy. I don't know about Lexington, but one of the top sarc docs in the world is at the U. of Cincinnati, which I think is about 1-1/2 hrs. away. Baughman is a pulmonologist, but is very knowledgeable about NS. His letter is what convinced SS to approve my disability. I don't have his contact info handy, as I lost my favorites when I changed computers & haven't found most of them yet. There is also a website for finding sarc docs; I didn't see anyone closer.

Your symptoms do sound like NS, but other causes need to be ruled out first. If you have biopsy-proven sarc & later develop neurologic symptoms, NS is likely, but not definite.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sat, 24 Apr 2010 02:36:25 +0000> Subject: NEW TO THE GROUP AND NEED ADVICE> > Hi I am new to the support group and need help. I was diagnosed with sarcoidosis in 2002. And move to Kentucky from New Orleans after huricane Katrina. I think I have neurosarcoidosis. I was first diagnosed from a polyp that was removed from the orbit of my left eye. I have since been told that I have a putuitary tumor and I suffer with facial swelling(bells palsy), joint pain, limb numbness and tingling, poor vision, headaches, and trouble breathing. I have not been able to find a doctor who specializes in treating patients with sarcoidosis. I live in Lexington, KY. And I would welcome any help?> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Hi, Sandy

You may also want to check out Sarcoidosis Center of Excellence which is a part

of Cleveland Clinic. http://my.clevelandclinic.org/sarcoidosis/default.aspx I

haven't been there myself but I have heard excellent things about it. There are

doctors there from every specialty who know about sarc. Dr. Baughman used to be

there before he went to University of Cincinatti. I hope this helps.

Praying that everyone here has a good day.

Sharon

>

> Hi I am new to the support group and need help. I was diagnosed with

sarcoidosis in 2002. And move to Kentucky from New Orleans after huricane

Katrina. I think I have neurosarcoidosis. I was first diagnosed from a polyp

that was removed from the orbit of my left eye. I have since been told that I

have a putuitary tumor and I suffer with facial swelling(bells palsy), joint

pain, limb numbness and tingling, poor vision, headaches, and trouble breathing.

I have not been able to find a doctor who specializes in treating patients with

sarcoidosis. I live in Lexington, KY. And I would welcome any help?

>