Dr. Baughman

[Guest guest]

Hi, Friends.

In my last message, I indicated that the neurosarcoidosis " expert " in Pittsburgh

that I took

my friend, , to was a very uninterested individual and our time in his

office was

wasted. The tragic part of that was that I traveled to Pittsburgh from New

Jersey by plane

and met and his family who drove over 2 hours each way in a snow storm.

is

confined to a wheelchair at this time and so travel in these conditions,

especially, is

inconvenient. To refresh your memory, or for new people, was operated on

two

years ago because he had a very quickly debilitating tumor, as had shown up on

an MRI.

His surgeon didn't know exactly what he had inside his spinal cord, and so,

instead of just

doing a small biopsy, he removed the tumor, which was later identified as

neurosarcoidosis. has distal paralysis from the stomach down and suffers

from

symptoms you all describe in your posts. We are trying to find someone who can

take all

of 's information and do a thorough evaluation of where he is with the

sarc/neurosarc

and where he may be headed. One of his problems is that he lives in a very

rural part of

PA and services are somewhat limited. I am willing to help him get to where he

needs to

be.

Which brings me to Dr. Baughman. I can't put through another useless,

wasted visit.

He usually maintains a very good attitude, but it's really getting to him now.

He is 25 years

old and is anxious about planning the rest of his life (anyone over 40 is

smiling now). So, I

wonder if it is possible or feasible to reach Dr. Baughman (I know he is in

Cincinnati) for a

consultation, or a referral. Some of you seem to have had some experience with

him.

There are insurance issues to deal with as well, which makes Pennsylvania a

better option

for . Someone here has suggested Hershey, PA, which may be the way to go,

but it is

pretty far from where lives (6 hours) and a couple of hours from me.

Pittsburgh (U.

Pitt) and Philadelphia are better options. I'm not sure what to do next. He is

having a

brain scan, total spine MRI, blood work, and chest xray done in the next few

weeks, as his

family physician is willing to try to help, but we need someone who can evaluate

his entire

profile. He has issues, I'm sure, with the paralysis that should be addressed

as well. This

is a lot of information at once, but I appreciate your considerations and

responses. I read

all of your posts and keep you all in my prayers. Bless you all. Thanks!

Joanne

[Guest guest]

Hi, Friends.

In my last message, I indicated that the neurosarcoidosis " expert " in Pittsburgh

that I took

my friend, , to was a very uninterested individual and our time in his

office was

wasted. The tragic part of that was that I traveled to Pittsburgh from New

Jersey by plane

and met and his family who drove over 2 hours each way in a snow storm.

is

confined to a wheelchair at this time and so travel in these conditions,

especially, is

inconvenient. To refresh your memory, or for new people, was operated on

two

years ago because he had a very quickly debilitating tumor, as had shown up on

an MRI.

His surgeon didn't know exactly what he had inside his spinal cord, and so,

instead of just

doing a small biopsy, he removed the tumor, which was later identified as

neurosarcoidosis. has distal paralysis from the stomach down and suffers

from

symptoms you all describe in your posts. We are trying to find someone who can

take all

of 's information and do a thorough evaluation of where he is with the

sarc/neurosarc

and where he may be headed. One of his problems is that he lives in a very

rural part of

PA and services are somewhat limited. I am willing to help him get to where he

needs to

be.

Which brings me to Dr. Baughman. I can't put through another useless,

wasted visit.

He usually maintains a very good attitude, but it's really getting to him now.

He is 25 years

old and is anxious about planning the rest of his life (anyone over 40 is

smiling now). So, I

wonder if it is possible or feasible to reach Dr. Baughman (I know he is in

Cincinnati) for a

consultation, or a referral. Some of you seem to have had some experience with

him.

There are insurance issues to deal with as well, which makes Pennsylvania a

better option

for . Someone here has suggested Hershey, PA, which may be the way to go,

but it is

pretty far from where lives (6 hours) and a couple of hours from me.

Pittsburgh (U.

Pitt) and Philadelphia are better options. I'm not sure what to do next. He is

having a

brain scan, total spine MRI, blood work, and chest xray done in the next few

weeks, as his

family physician is willing to try to help, but we need someone who can evaluate

his entire

profile. He has issues, I'm sure, with the paralysis that should be addressed

as well. This

is a lot of information at once, but I appreciate your considerations and

responses. I read

all of your posts and keep you all in my prayers. Bless you all. Thanks!

Joanne

[Guest guest]

Hi Joanne, I don't know if it is closer for you, but I saw Dr. Culver at Cleveland Clinic in Cleveland Ohio. He is supposed to be an expert in sarcoidosis. He hasn't been much help to me because he wants a biopsy that confirms sarcoidosis before he starts treatment. It's my neurologist that started the plaquenil. It might be worth a call to Clev. if the distance isn't too far. I don't know if you are familiar with Clev.Clinic, but in Ohio it's where our doctors send us if they can't figure out what's wrong or if we are too complicated for regular doctors. That's how I ended up there.The contact person there is Karla Pierson PA. Her phone # is . After my initial call she had me fax my info to her, Dr.Culver reviewed it and then I got an appt. If you need any other info let me know. I have been told by many that Dr. Culver is one of the best in the country with sarcoidosis. (that is I guess after you have a positive biopsy). I will keep you

and in my prayers. He is very blessed to have you fighting for and with him! God bless you! Cathybordenjoanne wrote: Hi, Friends.In my last message, I indicated that the neurosarcoidosis "expert" in Pittsburgh that I took my friend, , to was a very uninterested individual and our time in his office was wasted. The tragic part of that was that I traveled to Pittsburgh from New Jersey by plane and met and his family who drove over 2 hours each way in a snow storm. is

confined to a wheelchair at this time and so travel in these conditions, especially, is inconvenient. To refresh your memory, or for new people, was operated on two years ago because he had a very quickly debilitating tumor, as had shown up on an MRI. His surgeon didn't know exactly what he had inside his spinal cord, and so, instead of just doing a small biopsy, he removed the tumor, which was later identified as neurosarcoidosis. has distal paralysis from the stomach down and suffers from symptoms you all describe in your posts. We are trying to find someone who can take all of 's information and do a thorough evaluation of where he is with the sarc/neurosarc and where he may be headed. One of his problems is that he lives in a very rural part of PA and services are somewhat limited. I am willing to help him get to where he needs to be. Which brings me to Dr. Baughman. I can't put through another

useless, wasted visit. He usually maintains a very good attitude, but it's really getting to him now. He is 25 years old and is anxious about planning the rest of his life (anyone over 40 is smiling now). So, I wonder if it is possible or feasible to reach Dr. Baughman (I know he is in Cincinnati) for a consultation, or a referral. Some of you seem to have had some experience with him. There are insurance issues to deal with as well, which makes Pennsylvania a better option for . Someone here has suggested Hershey, PA, which may be the way to go, but it is pretty far from where lives (6 hours) and a couple of hours from me. Pittsburgh (U. Pitt) and Philadelphia are better options. I'm not sure what to do next. He is having a brain scan, total spine MRI, blood work, and chest xray done in the next few weeks, as his family physician is willing to try to help, but we need someone who can evaluate his entire profile. He has

issues, I'm sure, with the paralysis that should be addressed as well. This is a lot of information at once, but I appreciate your considerations and responses. I read all of your posts and keep you all in my prayers. Bless you all. Thanks! Joanne __________________________________________________

[Guest guest]

Hi Joanne, I don't know if it is closer for you, but I saw Dr. Culver at Cleveland Clinic in Cleveland Ohio. He is supposed to be an expert in sarcoidosis. He hasn't been much help to me because he wants a biopsy that confirms sarcoidosis before he starts treatment. It's my neurologist that started the plaquenil. It might be worth a call to Clev. if the distance isn't too far. I don't know if you are familiar with Clev.Clinic, but in Ohio it's where our doctors send us if they can't figure out what's wrong or if we are too complicated for regular doctors. That's how I ended up there.The contact person there is Karla Pierson PA. Her phone # is . After my initial call she had me fax my info to her, Dr.Culver reviewed it and then I got an appt. If you need any other info let me know. I have been told by many that Dr. Culver is one of the best in the country with sarcoidosis. (that is I guess after you have a positive biopsy). I will keep you

and in my prayers. He is very blessed to have you fighting for and with him! God bless you! Cathybordenjoanne wrote: Hi, Friends.In my last message, I indicated that the neurosarcoidosis "expert" in Pittsburgh that I took my friend, , to was a very uninterested individual and our time in his office was wasted. The tragic part of that was that I traveled to Pittsburgh from New Jersey by plane and met and his family who drove over 2 hours each way in a snow storm. is

confined to a wheelchair at this time and so travel in these conditions, especially, is inconvenient. To refresh your memory, or for new people, was operated on two years ago because he had a very quickly debilitating tumor, as had shown up on an MRI. His surgeon didn't know exactly what he had inside his spinal cord, and so, instead of just doing a small biopsy, he removed the tumor, which was later identified as neurosarcoidosis. has distal paralysis from the stomach down and suffers from symptoms you all describe in your posts. We are trying to find someone who can take all of 's information and do a thorough evaluation of where he is with the sarc/neurosarc and where he may be headed. One of his problems is that he lives in a very rural part of PA and services are somewhat limited. I am willing to help him get to where he needs to be. Which brings me to Dr. Baughman. I can't put through another

useless, wasted visit. He usually maintains a very good attitude, but it's really getting to him now. He is 25 years old and is anxious about planning the rest of his life (anyone over 40 is smiling now). So, I wonder if it is possible or feasible to reach Dr. Baughman (I know he is in Cincinnati) for a consultation, or a referral. Some of you seem to have had some experience with him. There are insurance issues to deal with as well, which makes Pennsylvania a better option for . Someone here has suggested Hershey, PA, which may be the way to go, but it is pretty far from where lives (6 hours) and a couple of hours from me. Pittsburgh (U. Pitt) and Philadelphia are better options. I'm not sure what to do next. He is having a brain scan, total spine MRI, blood work, and chest xray done in the next few weeks, as his family physician is willing to try to help, but we need someone who can evaluate his entire profile. He has

issues, I'm sure, with the paralysis that should be addressed as well. This is a lot of information at once, but I appreciate your considerations and responses. I read all of your posts and keep you all in my prayers. Bless you all. Thanks! Joanne __________________________________________________