RE: Doctor in land

May 26, 2006

Connie, I'm sorry you are getting such a runaround. It seems that there aren't many doctors out there who actually relish a challenge.

The doctor in land is Barney (BJ) Stern. I saw him twice when he was at Emory U. in Atlanta. I was very impressed with him. My local neuro had told me the year before (2001) that he thought I had NS, but wouldn't treat me because all the tests were normal. I found Dr. Stern on the Internet & arranged to see him during a midwifery conference in Atlanta, so I didn't have the expense of going down there. He did a very thorough history & physical exam, checking things that nobody had ever checked. Not just the needle prick, but tuning fork, temperature changes, some other stuff. He had no doubt that I had NS & needed treatment immediately. I was impressed that he relied on my history & description of symptoms and his own exam, more than a bunch of tests. That's a dying breed. But he saw something that looked, walked & quacked like a duck, and called it a duck. Then I saw him the following year for follow-up. I had heard somewhere that he was going to focus his research more on strokes in young women (his other area of interest), but hopefully he still sees NS patients.

I would keep after your neuro until he calls Stern. Stern may even give him some guidelines for treatment over the phone, especially since he's worked with him. But you may have to keep badgering your doc to call.

Connie, good luck with this, and prayers coming at you from Indiana.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Doctor in landDate: Fri, 26 May 2006 08:14:18 -0700 (PDT)

Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while.

Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember.

He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision.

I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly.

Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me.

I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was.

Thanks for letting me vent.....BAD day///Connie

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 26, 2006

Connie, I'm sorry you are getting such a runaround. It seems that there aren't many doctors out there who actually relish a challenge.

The doctor in land is Barney (BJ) Stern. I saw him twice when he was at Emory U. in Atlanta. I was very impressed with him. My local neuro had told me the year before (2001) that he thought I had NS, but wouldn't treat me because all the tests were normal. I found Dr. Stern on the Internet & arranged to see him during a midwifery conference in Atlanta, so I didn't have the expense of going down there. He did a very thorough history & physical exam, checking things that nobody had ever checked. Not just the needle prick, but tuning fork, temperature changes, some other stuff. He had no doubt that I had NS & needed treatment immediately. I was impressed that he relied on my history & description of symptoms and his own exam, more than a bunch of tests. That's a dying breed. But he saw something that looked, walked & quacked like a duck, and called it a duck. Then I saw him the following year for follow-up. I had heard somewhere that he was going to focus his research more on strokes in young women (his other area of interest), but hopefully he still sees NS patients.

I would keep after your neuro until he calls Stern. Stern may even give him some guidelines for treatment over the phone, especially since he's worked with him. But you may have to keep badgering your doc to call.

Connie, good luck with this, and prayers coming at you from Indiana.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Doctor in landDate: Fri, 26 May 2006 08:14:18 -0700 (PDT)

Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while.

Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember.

He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision.

I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly.

Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me.

I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was.

Thanks for letting me vent.....BAD day///Connie

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 26, 2006

Connie, I'm so sorry you are going through bad times. That sucks! I know I don't need to say it, but keep on those docs. You know your body. I hope someone else in the group can give you a bit more guidance on how to handle this situation. But I've got your back in spirit and will send my good thoughts and prayers your way. My pulmonologist is the same way as yours, and if it weren't for me being persistent, he'd still have me on a high dose of pred. I hope that doctor is able to give you a good referral for a doc in Florida. I live in MD, thank you for the head's up on the doc. I have my first appt. with a neuro in a few months at 's Hopkins. My doc said it wasn't necessary for me to go to the neuro, but I want to take the tests to find out if the sarc is spreading or not. I already am affected in 3 places why wouldn't it spread? I'm afraid to know the truth, but I have to know.

Naa KoshieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him

if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining

everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with

the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver__________________________________________________

May 26, 2006

Rose, I am sitting here with tears in my eyes. You don't how much what you wrote means. The reason my regular neuro wouldn't treat was "all the tests were normal", I felt like beating my head up against a wall, I even had him talk to my mother - she was with me. Now at least I know that it is possible in this area of sarc also, to have supposedly normal tests and something still be totally out of whack. I am not hunting trouble, I've got enough going on, but I know something is wrong, and I need an answer. I will keep trying, thank you so much for the encouragement; I try to keep my emails light because everyone here faces alot, but it has been more tough than usual since yesterday. By the way if you ever feel your career of touching peoples lives has ended contact me and I will set you straight. You are a blessing, all of you on this site are. It is

always easier to face battles when you have trusted friends at your side. Thank you for including me in your circle...........ConnieRose wrote: Connie, I'm sorry you are getting such a runaround. It seems that there aren't many doctors out there who actually relish a challenge. The doctor in land is Barney (BJ) Stern. I saw him twice when he was at Emory U. in Atlanta. I was very impressed with him. My local neuro had told me the year before (2001) that he thought I had NS, but wouldn't treat me because all the tests were normal. I found Dr. Stern on the Internet & arranged to see him during a midwifery conference in Atlanta, so I didn't have the expense of going down there. He

did a very thorough history & physical exam, checking things that nobody had ever checked. Not just the needle prick, but tuning fork, temperature changes, some other stuff. He had no doubt that I had NS & needed treatment immediately. I was impressed that he relied on my history & description of symptoms and his own exam, more than a bunch of tests. That's a dying breed. But he saw something that looked, walked & quacked like a duck, and called it a duck. Then I saw him the following year for follow-up. I had heard somewhere that he was going to focus his research more on strokes in young women (his other area of interest), but hopefully he still sees NS patients. I would keep after your neuro until he calls Stern. Stern may even give him some guidelines for treatment over the phone, especially since he's worked with him. But you may have to keep badgering your doc to

call. Connie, good luck with this, and prayers coming at you from Indiana. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Doctor in landDate: Fri, 26 May 2006 08:14:18 -0700 (PDT) Yesterday when I was

at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a

great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak,

my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 26, 2006

Thank you so much, all of your prayers and thoughts are cherished by me. It helps a great deal to know I am not alone. For all your sakes, I wish I were....Connie"Naa Koshie O. Mills" wrote: Connie, I'm so sorry you are going through bad times. That sucks! I know I don't need to say it, but keep on those docs. You know your body. I hope someone else in the group can give you a bit more guidance on how to handle this situation. But I've got your back in spirit and will send my good thoughts and prayers your way. My pulmonologist is the same way as yours, and if it weren't for me being persistent, he'd still have me on a high dose of pred. I hope that doctor is able to give you a good referral for a doc in Florida. I live in MD, thank you for the

head's up on the doc. I have my first appt. with a neuro in a few months at 's Hopkins. My doc said it wasn't necessary for me to go to the neuro, but I want to take the tests to find out if the sarc is spreading or not. I already am affected in 3 places why wouldn't it spread? I'm afraid to know the truth, but I have to know. Naa KoshieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get

his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've

reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so

frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you

will have been all of these." ~ Washington Carver __________________________________________________

May 26, 2006

Thank you so much, all of your prayers and thoughts are cherished by me. It helps a great deal to know I am not alone. For all your sakes, I wish I were....Connie"Naa Koshie O. Mills" wrote: Connie, I'm so sorry you are going through bad times. That sucks! I know I don't need to say it, but keep on those docs. You know your body. I hope someone else in the group can give you a bit more guidance on how to handle this situation. But I've got your back in spirit and will send my good thoughts and prayers your way. My pulmonologist is the same way as yours, and if it weren't for me being persistent, he'd still have me on a high dose of pred. I hope that doctor is able to give you a good referral for a doc in Florida. I live in MD, thank you for the

head's up on the doc. I have my first appt. with a neuro in a few months at 's Hopkins. My doc said it wasn't necessary for me to go to the neuro, but I want to take the tests to find out if the sarc is spreading or not. I already am affected in 3 places why wouldn't it spread? I'm afraid to know the truth, but I have to know. Naa KoshieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get

his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've

reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so

frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you

will have been all of these." ~ Washington Carver __________________________________________________

May 26, 2006

Thank you so much, all of your prayers and thoughts are cherished by me. It helps a great deal to know I am not alone. For all your sakes, I wish I were....Connie"Naa Koshie O. Mills" wrote: Connie, I'm so sorry you are going through bad times. That sucks! I know I don't need to say it, but keep on those docs. You know your body. I hope someone else in the group can give you a bit more guidance on how to handle this situation. But I've got your back in spirit and will send my good thoughts and prayers your way. My pulmonologist is the same way as yours, and if it weren't for me being persistent, he'd still have me on a high dose of pred. I hope that doctor is able to give you a good referral for a doc in Florida. I live in MD, thank you for the

head's up on the doc. I have my first appt. with a neuro in a few months at 's Hopkins. My doc said it wasn't necessary for me to go to the neuro, but I want to take the tests to find out if the sarc is spreading or not. I already am affected in 3 places why wouldn't it spread? I'm afraid to know the truth, but I have to know. Naa KoshieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get

his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've

reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so

frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you

will have been all of these." ~ Washington Carver __________________________________________________

May 26, 2006

Connie, it's so ridiculous what people have to go through. This is a quote from someone on the list a few years back:

Having rare diseases is kinda like being an orphan, and untilsomeone takes an interest in you, and "adopts" you, you are just left on your own to find your own help.

I couldn't express it any better than that.

Connie, don't ever feel that you have to put on a cheery front when you feel depressed, in a murderous rage or anything else. That's why this is such an important group, so you can feel safe sharing those feelings. Don't think that it will be too much of a burden. Often being able to help someone else, with information or support, brings us out of a slump & reminds us that we have a purpose, that we are not useless. Like the beautiful thing you said to me; I may go back & reread that 20 times when I'm feeling down. It's a gift to others to allow them to help you. Give that gift freely.

It is quite possible to have NS and all test results be normal. I have never had an elevated ACE, MRI's all normal (by my local radiologists; Dr. Stern found some abnormalities in one of the films I took to him.) My one spinal tap was normal (although Dr. Baughman disagreed; he thought the elevated protein was significant.), all the VEP, BAER, EMG's, etc. all normal (just carpal tunnel on EMG). I had a lymph node biopsy positive for sarc; then 5 years later began having signs of CNS involvement (hearing loss, facial palsy), but no one considered NS for two more years. Then my local neuro was sure it was NS, but wouldn't treat me because "the tests were normal." I do respect him for hesitating to start Prednisone, with all its risks & side effects, but I sorely wish he'd done a little research, like I did, and looked at all the options. Instead, it was another year, after I paid out-of-pocket to see Dr. Stern, before treatment was started. By that time I also had pulmonary damage.

Connie, this is why you have to keep after your doctor. Don't let him intimidate you. The last visit with my neuro, when I told him I wanted to start Cytoxan, he was really hesitant. I just laid it out for him: I said, "Maybe I don't look too bad to you. But just imagine yourself, you've got your life planned out. But then over 2 or 3 years, you have to give up your plans. Maybe first you have to stop doing spinal taps & other invasive procedures, then you can't see patients anymore because you make mistakes, can't remember important things. You lose your medical career, you can't play the saxophone anymore, you can just sit & watch tv, read a little (if it's not too difficult a book), type on the computer. Tell me that you wouldn't want to try something, anything, to try to get back some of what you've lost, or at least not lose anymore!" He just looked at me, nodded, and said he'd start working on Medicare authorization.

You are welcome to use my little speech (might have to leave out the sax part, if he doesn't play!). Sometimes this is what it takes for the docs to see how this disease affects us. Or whatever disease we have. We need a diagnosis, not just a pat on the shoulder & "see you back in 6 mos."

Well, another one of my long, looooonnnnngggg messages!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Doctor in landDate: Fri, 26 May 2006 12:05:12 -0700 (PDT)

Rose,

I am sitting here with tears in my eyes. You don't how much what you wrote means. The reason my regular neuro wouldn't treat was "all the tests were normal", I felt like beating my head up against a wall, I even had him talk to my mother - she was with me. Now at least I know that it is possible in this area of sarc also, to have supposedly normal tests and something still be totally out of whack. I am not hunting trouble, I've got enough going on, but I know something is wrong, and I need an answer.

I will keep trying, thank you so much for the encouragement; I try to keep my emails light because everyone here faces alot, but it has been more tough than usual since yesterday. By the way if you ever feel your career of touching peoples lives has ended contact me and I will set you straight. You are a blessing, all of you on this site are. It is always easier to face battles when you have trusted friends at your side.

Thank you for including me in your circle...........ConnieRose wrote:

Connie, I'm sorry you are getting such a runaround. It seems that there aren't many doctors out there who actually relish a challenge.

The doctor in land is Barney (BJ) Stern. I saw him twice when he was at Emory U. in Atlanta. I was very impressed with him. My local neuro had told me the year before (2001) that he thought I had NS, but wouldn't treat me because all the tests were normal. I found Dr. Stern on the Internet & arranged to see him during a midwifery conference in Atlanta, so I didn't have the expense of going down there. He did a very thorough history & physical exam, checking things that nobody had ever checked. Not just the needle prick, but tuning fork, temperature changes, some other stuff. He had no doubt that I had NS & needed treatment immediately. I was impressed that he relied on my history & description of symptoms and his own exam, more than a bunch of tests. That's a dying breed. But he saw something that looked, walked & quacked like a duck, and called it a duck. Then I saw him the following year for follow-up. I had heard somewhere that he was going to focus his research more on strokes in young women (his other area of interest), but hopefully he still sees NS patients.

I would keep after your neuro until he calls Stern. Stern may even give him some guidelines for treatment over the phone, especially since he's worked with him. But you may have to keep badgering your doc to call.

Connie, good luck with this, and prayers coming at you from Indiana.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Doctor in landDate: Fri, 26 May 2006 08:14:18 -0700 (PDT)

Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while.

Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember.

He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision.

I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly.

Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me.

I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was.

Thanks for letting me vent.....BAD day///Connie

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 27, 2006

Connie - I completely understand where you're coming from. I'm sorry that you are having such a downer today. Think of our group as a little island oasis full of people who love you and understand and don't think you're crazy. You vent as much as you want, and don't even think twice about it. Tomorrow's a new day. Love,JeannieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that

area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you

can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like

right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

May 27, 2006

Connie - I completely understand where you're coming from. I'm sorry that you are having such a downer today. Think of our group as a little island oasis full of people who love you and understand and don't think you're crazy. You vent as much as you want, and don't even think twice about it. Tomorrow's a new day. Love,JeannieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that

area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you

can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like

right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

May 27, 2006

Connie - I completely understand where you're coming from. I'm sorry that you are having such a downer today. Think of our group as a little island oasis full of people who love you and understand and don't think you're crazy. You vent as much as you want, and don't even think twice about it. Tomorrow's a new day. Love,JeannieConnie Griffis wrote: Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that

area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you

can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like

right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

May 30, 2006

Rose, Again thank you for your long messages. It helps so much. I too have had my sentinel node biopsied. It was so discolored and fell apart in the surgeons hand. He told me he just knew I had cancer till the pathology came back. (Emory Univ). I have lung infiltrate, I have had extensive lymph adenopathy & hilar. They did a bronchoscopy 5/05 and found my bronchial tubes were full of granulomas, ie this was why I was smothering to death and coughed almost every breath. (All my regular tests were normal, PFT,etc The pulm. was nice enough to tell me that was possible with sarcoid then put me on 60 mg of pred a day). I had an arteriogram due to chest pain and something shooting up my neck and exploding in the right side of my head 11/04 and the cardiologist came out after the procedure and told my mother and I, "it's that *%#!

sarcoid in her heart and up her neck". You can see and feel the granulomas in my hands especially the right one, and since I lowered the prednisone my knees & back are hurting so bad and are so stiff I'm having trouble walking & I'm losing my balance, memory is getting worse, and I keep losing words. I couldn't figure out how to get help with my meds so I called my complex case manager through my insurance company and she is trying to find a sarcoid doctor for me, to do something with my medicine. My pulmonologist won't budge off prednisone and acts like lungs are all that sarcoid affects. (What part of I don't think so does he not understand) Just keep me in your prayers my frustration level is getting high, mainly because I don't know where to turn. It'll be alright I know, God knows where just the right doctor is/////Thanks for everything,

Connie Rose wrote: Connie, it's so ridiculous what people have to go through. This is a quote from someone on the list a few years back: Having rare diseases is kinda like being an orphan, and untilsomeone takes an interest in you, and "adopts" you, you are just left on your own to find your own help. I couldn't express it any better than that. Connie, don't ever feel that you have to put on a cheery front when you feel depressed, in a murderous rage or anything else. That's why this is such an important group, so you can feel safe sharing those feelings. Don't think that it will

be too much of a burden. Often being able to help someone else, with information or support, brings us out of a slump & reminds us that we have a purpose, that we are not useless. Like the beautiful thing you said to me; I may go back & reread that 20 times when I'm feeling down. It's a gift to others to allow them to help you. Give that gift freely. It is quite possible to have NS and all test results be normal. I have never had an elevated ACE, MRI's all normal (by my local radiologists; Dr. Stern found some abnormalities in one of the films I took to him.) My one spinal tap was normal (although Dr. Baughman disagreed; he thought the elevated protein was significant.), all the VEP, BAER, EMG's, etc. all normal (just carpal tunnel on EMG). I had a lymph node biopsy positive for sarc; then 5 years later began having signs of CNS involvement (hearing loss, facial

palsy), but no one considered NS for two more years. Then my local neuro was sure it was NS, but wouldn't treat me because "the tests were normal." I do respect him for hesitating to start Prednisone, with all its risks & side effects, but I sorely wish he'd done a little research, like I did, and looked at all the options. Instead, it was another year, after I paid out-of-pocket to see Dr. Stern, before treatment was started. By that time I also had pulmonary damage. Connie, this is why you have to keep after your doctor. Don't let him intimidate you. The last visit with my neuro, when I told him I wanted to start Cytoxan, he was really hesitant. I just laid it out for him: I said, "Maybe I don't look too bad to you. But just imagine yourself, you've got your life planned out. But then over 2 or 3 years, you have to give up your plans. Maybe first you have

to stop doing spinal taps & other invasive procedures, then you can't see patients anymore because you make mistakes, can't remember important things. You lose your medical career, you can't play the saxophone anymore, you can just sit & watch tv, read a little (if it's not too difficult a book), type on the computer. Tell me that you wouldn't want to try something, anything, to try to get back some of what you've lost, or at least not lose anymore!" He just looked at me, nodded, and said he'd start working on Medicare authorization. You are welcome to use my little speech (might have to leave out the sax part, if he doesn't play!). Sometimes this is what it takes for the docs to see how this disease affects us. Or whatever disease we have. We need a diagnosis, not just a pat on the shoulder & "see you back in 6 mos." Well, another one of my long,

looooonnnnngggg messages! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Doctor in landDate: Fri, 26 May 2006 12:05:12 -0700 (PDT) Rose, I am sitting here with tears in my eyes. You don't how much what you wrote means. The reason my

regular neuro wouldn't treat was "all the tests were normal", I felt like beating my head up against a wall, I even had him talk to my mother - she was with me. Now at least I know that it is possible in this area of sarc also, to have supposedly normal tests and something still be totally out of whack. I am not hunting trouble, I've got enough going on, but I know something is wrong, and I need an answer. I will keep trying, thank you so much for the encouragement; I try to keep my emails light because everyone here faces alot, but it has been more tough than usual since yesterday. By the way if you ever feel your career of touching peoples lives has ended contact me and I will set you straight. You are a blessing, all of you on this site are. It is always easier to face battles when you have trusted friends at your side. Thank you for including me in your

circle...........ConnieRose wrote: Connie, I'm sorry you are getting such a runaround. It seems that there aren't many doctors out there who actually relish a challenge. The doctor in land is Barney (BJ) Stern. I saw him twice when he was at Emory U. in Atlanta. I was very impressed with him. My local neuro had told me the year before (2001) that he thought I had NS, but wouldn't treat me because all the tests were normal. I found Dr. Stern on the Internet & arranged to see him during a midwifery conference in Atlanta, so I didn't have the expense of going down there. He did a very thorough history & physical exam, checking things that nobody had ever checked. Not just the needle prick, but tuning

fork, temperature changes, some other stuff. He had no doubt that I had NS & needed treatment immediately. I was impressed that he relied on my history & description of symptoms and his own exam, more than a bunch of tests. That's a dying breed. But he saw something that looked, walked & quacked like a duck, and called it a duck. Then I saw him the following year for follow-up. I had heard somewhere that he was going to focus his research more on strokes in young women (his other area of interest), but hopefully he still sees NS patients. I would keep after your neuro until he calls Stern. Stern may even give him some guidelines for treatment over the phone, especially since he's worked with him. But you may have to keep badgering your doc to call. Connie, good luck with this, and prayers coming at you from Indiana. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: "neurosarcoidosis " <neurosarcoidosis >Subject: Doctor in landDate: Fri, 26 May 2006 08:14:18 -0700 (PDT) Yesterday when I was at my neurologist appointment he said that there was a "world famous" Sarcoid Neurologist in land. His name is Dr. Sterns (not exactly

sure about the spelling) I do know he was at Emory Univ in Atlanta for a good while. Thought I would let you know in case there is anyone in that area, or close by. If you need me too I will try and get his first name. The doctor told me but I can't remember. He was trying to find a neurologist that specializes in sarc for me. Because I can not undergo a MRI (pacer) it is making it very difficult to figure out what is happening to my head. He worked with Dr Sterns at one time and was going to ask him if he knew of someone in or near florida. Because he definitely can't determine what is going on he will not take on my medication supervision. I am so down. My pulmonologist is a great person, but he acts like the only thing sarc affects is lungs, and the only thing for sarc is pred. When I try to talk to him about the

other systemic things that are happening, or doing something about the pred. he just gives me an infuriating "I'm being tolerant" smile like you would give your child when they ask you can they fly. Since I've reduced the pred my joints, spine, head etc have just gone haywire. I don't know where to turn to get somebody to take care of the systemic problems, or how to get someone to understand what is happening to my brain. I know something is really wrong and so does my family. I asked my mother to honestly tell me was I just imagining everything that was happening to me the speech problems, numbness, headaches, etc or did she notice a difference. She said no I was not imagining it that weird things were happening when I tried to speak, my memory was awful and my personality was changing, she just hadn't said much to me because she didn't want to upset me. I honestly just feel like ditching doctors, medicine, the whole shooting match and bucking up and shutting up. I don't know how long I could last, but if I did what I felt like right now I cry and scream at the same time. I am so frustrated, it feels like it did before I got my pacer. I knew without a doubt from everything that was happening, that there was something terribly wrong with my heart. But it took it almost killing me before anyone would even halfway listen, and they were still giving me grief till they put it in and found out how messed it was. Thanks for letting me vent.....BAD day///Connie Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. ~~~~ *** ~~~ ***

~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

May 30, 2006