Referral to a Neurosarcoidosis specialists in Pennsylvania?

[Guest guest]

Hubby has had sarcoid since he was about 25; he is 46 now. Granulomas

in lungs. Lymph nodes removed. In 2002 it hit the spleen. Blood test

showed villous lymphycites in blood. Spleen was removed.

He's been on a big downslide for about a year, docs looked for MS and

everything else. Lots and lots of tests. I kept saying neurosarcoid.

Finally today last tests, colonoscopy & endoscopy. Everything

perfectly clear.

I said neurosarcoidosis again and family doctor now agrees that we

might have him see a neurologist.

Is there a website or referral list that I can find a neurologist who

knows neurosarcoid? We live in West Chester, PA about 45 minutes west

of Philadelphia.

Thanks,

Kathleen

[Guest guest]

Kathleen, try this link

http://www.sarcoidcenter.com/sarexperts/sarexpertsusa.htm#United%

20States, scroll down to Pennsylvania and you should be able to find

what you need. Hope this helps.

If it doesn't work go to www.sarcoidcenter.com scroll to the bottom

and find sarcoid experts, then click on United States, then scroll

down to your state..

Welcome to the group btw.

Hugs,

>

> Hubby has had sarcoid since he was about 25; he is 46 now.

Granulomas

> in lungs. Lymph nodes removed. In 2002 it hit the spleen. Blood

test

> showed villous lymphycites in blood. Spleen was removed.

>

> He's been on a big downslide for about a year, docs looked for MS

and

> everything else. Lots and lots of tests. I kept saying

neurosarcoid.

> Finally today last tests, colonoscopy & endoscopy. Everything

> perfectly clear.

>

> I said neurosarcoidosis again and family doctor now agrees that we

> might have him see a neurologist.

>

> Is there a website or referral list that I can find a neurologist

who

> knows neurosarcoid? We live in West Chester, PA about 45 minutes

west

> of Philadelphia.

>

> Thanks,

>

> Kathleen

>