Re: NEW TO THE GROUP AND NEED ADVICE

[Guest guest]

Thank you for the advise I will check into it.

> >

> > 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?

> >

>

[Guest guest]

Thank you Rose

>

>

> 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' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: sdecquir@...

> > 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]

I live about 45 minutes North of Louisville and make the trip to

Cincinnati to see Dr Baughman. I did quite a bit of research after

I was diagnosed, as I wanted to stack the deck in my favor. I was so

happy to find Dr. Baughman (especially after dealing with a “cookie

cutter pulmonologist.” )

Dr. Baughman has patients who travel from all over the country

to see him. In my opinion, he is AWESOME! My first visit

lasted at least over an hour. I almost felt guilty as he spent so much

one-on-one time with me.! We viewed my XRAYs and CTs scan together and he explained

what he saw and what his opinions were of what he saw. He then presented

me with a multitude of options, patiently discussing the possible upsides and

downsides of each treatment plan. We made a decision TOGETHER.

I believe he is a very caring doctor who will listen to you. I believe he truly

cares. (I think his wife does cancer research.)

You can reach Dr. Baughman at

Good Luck!

Dawn MacNamara

field, Kentucky

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ] On Behalf Of SandyD

Sent: Monday, April 26, 2010 8:02 PM

To: Neurosarcoidosis

Subject: Re: NEW TO THE GROUP AND NEED ADVICE

Thank you Rose

>

>

> 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' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: sdecquir@...

> > 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

> >

> >