Re: [SPAM] Re: neurosarcoidosis

[Guest guest]

Madonna

That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone.

This is Jackie from WI

[sPAM] Re: neurosarcoidosis

Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna

[Guest guest]

Hi my name is Helen.I live in Memphis,Tenn.I've had Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and the things that can occur having it in this area make me scared.I am scheduled to take three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie wrote: Madonna That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re: neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is

what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna HELEN

[Guest guest]

Hi Helen,

I'm sorry that you're having to deal with the sarc monster. It sounds like you've got a good case of Bell's Palsy, (7th cranial nerve) where the left side of the face sags, and often times the eyelid on that eye doesn't close correctly. If that is happening, do get in and see the Ophthalmologist-- MD. They can help with the dry eye resulting from this. They can also run different visual field tests to see how much and where the brain involvement is and whether it's a one sided issue, or both sides.

It sounds like you are in good hands, and they've at least id'd whats going on.

I do hope that they get you on some immunosupressants other than prednisone. Imuran, Methotrexate, Plaquenil, Arava, Humira, Enbrel and Remicade are all choices. They'll need to add one at a time to see if it helps, and they'll go up the ladder starting with the various DMARDS (Disease Modifying Anti-Rheumatics Drugs) and then if necessary add the BRM's-- Biological Response Modifiers.

You can go to www.arthritis.org and check out a 2007 Drug Issue to see what all the meds are.

The good news with NS is that it is a slow progression and when we learn to pace ourself, and get the right combination of meds, we can function fairly well. I think the biggest challenge is the constant extreme fatigue.

We have a wealth of information in our ARCHIVES and LINKS. The address for that part of the group site is at the bottom of this and every email sent-- so scroll down and you'll see where you can go and print out info to share with your MD's and family.

Don't hesitate to ask questions, and we'll try to get you some answers. If we don't know, we research the issue and see what is out there-- so know you're not alone.

Take care, and welcome to the gang,

Tracie

NS Co-owner/moderator

[sPAM][Neurosarcoid osis] Re: neurosarcoidosis

Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay

positive.Madonna

HELEN

[Guest guest]

Helen, I understand how scared you must feel. I'm just now getting over my round of Bell's Palsy. Mine started in December on my right side, then 2 weeks later went to my left side (so my whole face was paralyzed), then 2 weeks after that went back to my right side. And, what made it even weirder was every time it happened, it happened on a Wednesday..lol. That's when I first got diagnosed with NS. Because my doctor said that Bell's Palsy won't migrate from side to side like that, and because of my other symptoms that's when they did my biopsy to check for NS. I have Vertigo as well. Any time my husband goes to do a U-turn in the car pretty quickly, I feel like I am gonna be sick it makes me so dizzy. If you don't mind, may I ask what the names of the neuroligical tests are that you are having done in June? My thoughts and prayers are with you. ChristyHelen wrote: Hi my name is Helen.I live in Memphis,Tenn.I've had Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and

the things that can occur having it in this area make me scared.I am scheduled to take three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie <shadowme810 (AT) verizon (DOT) net> wrote: Madonna That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re: neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the

weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna HELEN

[Guest guest]

HI EVERYONE,I HOPE YOU ALL ARE FEEING OK.CHRISTINA I WILL GLADLY SHARE THE NAMES OF THE TEST I'M SCHEDULED TO TAKE JUNE 4TH.THE PROCEDURES ARE 1.BAER(BRAINSTEM AUDITORY POTENTIAL)2.(VEP(VISUAL EVOKED POTENIAL)3.(SSEPSOMATOSENSORY EVOKED POTENIAL)christina cates wrote: Helen, I understand how scared you must feel. I'm just now getting over my round of Bell's Palsy. Mine started in December on my right side, then 2 weeks later went to my left side (so my whole face was paralyzed), then 2 weeks after that

went back to my right side. And, what made it even weirder was every time it happened, it happened on a Wednesday..lol. That's when I first got diagnosed with NS. Because my doctor said that Bell's Palsy won't migrate from side to side like that, and because of my other symptoms that's when they did my biopsy to check for NS. I have Vertigo as well. Any time my husband goes to do a U-turn in the car pretty quickly, I feel like I am gonna be sick it makes me so dizzy. If you don't mind, may I ask what the names of the neuroligical tests are that you are having done in June? My thoughts and prayers are with you. ChristyHelen <hmwalker9 (AT) yahoo (DOT) com> wrote: Hi my name is Helen.I live in Memphis,Tenn.I've had Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I

got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and the things that can occur having it in this area make me scared.I am scheduled to take three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie <shadowme810 (AT) verizon (DOT) net> wrote: Madonna That is excellent advise. I hope you don't mind if I use

it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re: neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the

optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna HELEN HELEN

[Guest guest]

Hi Cates and everyone, I hope all is well with you all at this moment.The name of the procedures I'm scheduled for are 1.BAER-BRAINSTEM AUDITORY EVOKED POTENTIAL.2.VEP.VISUAL EVOKED POTENTIAL AND THE SSEP.SOMATOSENSORY EVOKED POTENIAL. I SENT THIS AGAIN.I DON'T THIMK IT WENT THROUGH THE FIRST TIME.AS YOUR DAY SO SHALL YOUR STRENGTH BE.christina cates wrote: Helen, I understand how scared you must feel. I'm just now getting over my round of Bell's Palsy. Mine started in December on my right

side, then 2 weeks later went to my left side (so my whole face was paralyzed), then 2 weeks after that went back to my right side. And, what made it even weirder was every time it happened, it happened on a Wednesday..lol. That's when I first got diagnosed with NS. Because my doctor said that Bell's Palsy won't migrate from side to side like that, and because of my other symptoms that's when they did my biopsy to check for NS. I have Vertigo as well. Any time my husband goes to do a U-turn in the car pretty quickly, I feel like I am gonna be sick it makes me so dizzy. If you don't mind, may I ask what the names of the neuroligical tests are that you are having done in June? My thoughts and prayers are with you. ChristyHelen <hmwalker9 (AT) yahoo (DOT) com> wrote: Hi my name is Helen.I live in Memphis,Tenn.I've had

Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and the things that can occur having it in this area make me scared.I am scheduled to take three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie <shadowme810 (AT) verizon (DOT) net> wrote: Madonna That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re:

neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of

luck to you and stay positive.Madonna HELEN HELEN

[Guest guest]

Helen, I was asking, thinking that maybe I had gone through the same, but I have not. Never heard of them. Hope all is well with you, too. Keep us informed. Have a great day. ChristyHelen wrote: Hi Cates and everyone, I hope all is well with you all at this moment.The name of the procedures I'm scheduled for are 1.BAER-BRAINSTEM AUDITORY EVOKED POTENTIAL.2.VEP.VISUAL EVOKED POTENTIAL AND THE SSEP.SOMATOSENSORY EVOKED POTENIAL. I SENT THIS AGAIN.I DON'T THIMK IT WENT

THROUGH THE FIRST TIME.AS YOUR DAY SO SHALL YOUR STRENGTH BE.christina cates <paulsgirl75 (AT) yahoo (DOT) com> wrote: Helen, I understand how scared you must feel. I'm just now getting over my round of Bell's Palsy. Mine started in December on my right side, then 2 weeks later went to my left side (so my whole face was paralyzed), then 2 weeks after that went back to my right side. And, what made it even weirder was every time it happened, it happened on a Wednesday..lol. That's when I first got diagnosed with NS. Because my doctor said that Bell's Palsy won't migrate from side to side like that, and because of my other symptoms that's when they did my biopsy to check for NS. I have Vertigo as well. Any time my husband goes to do a U-turn in the car pretty quickly, I feel like I am gonna be sick it makes me so dizzy. If you don't mind, may I ask what

the names of the neuroligical tests are that you are having done in June? My thoughts and prayers are with you. ChristyHelen <hmwalker9 (AT) yahoo (DOT) com> wrote: Hi my name is Helen.I live in Memphis,Tenn.I've had Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and the things that can occur having it in this area make me scared.I am scheduled to take

three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie <shadowme810 (AT) verizon (DOT) net> wrote: Madonna That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re: neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is

what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna HELEN HELEN

[Guest guest]

I will.As your day so shall your strength be.christina cates wrote: Helen, I was asking, thinking that maybe I had gone through the same, but I have not. Never heard of them. Hope all is well with you, too. Keep us informed. Have a great day. ChristyHelen <hmwalker9 (AT) yahoo (DOT) com> wrote: Hi Cates and everyone, I hope all is well with you all at this

moment.The name of the procedures I'm scheduled for are 1.BAER-BRAINSTEM AUDITORY EVOKED POTENTIAL.2.VEP.VISUAL EVOKED POTENTIAL AND THE SSEP.SOMATOSENSORY EVOKED POTENIAL. I SENT THIS AGAIN.I DON'T THIMK IT WENT THROUGH THE FIRST TIME.AS YOUR DAY SO SHALL YOUR STRENGTH BE.christina cates <paulsgirl75 (AT) yahoo (DOT) com> wrote: Helen, I understand how scared you must feel. I'm just now getting over my round of Bell's Palsy. Mine started in December on my right side, then 2 weeks later went to my left side (so my whole face was paralyzed), then 2 weeks after that went back to my right side. And, what made it even weirder was every time it happened, it happened on a Wednesday..lol. That's when I first got diagnosed with NS. Because my doctor said that Bell's Palsy won't migrate from side to side like that, and because of my other symptoms that's

when they did my biopsy to check for NS. I have Vertigo as well. Any time my husband goes to do a U-turn in the car pretty quickly, I feel like I am gonna be sick it makes me so dizzy. If you don't mind, may I ask what the names of the neuroligical tests are that you are having done in June? My thoughts and prayers are with you. ChristyHelen <hmwalker9 (AT) yahoo (DOT) com> wrote: Hi my name is Helen.I live in Memphis,Tenn.I've had Sarcoidosis of the lungs and eyes since 2002.I was diagnosed with SarcoidArtiritis last year.Three weeks ago I got sick and was hospitalized for five days.I have white spots on my brain.I lost my hearing in my left ear.I was diagnosed with Vertigo and Neurosarcoidosis.I'm scare.The left side of my face is numb.The sound and the movement in my left ear causes my head and right side of my

face to go numb sometimes.I've been able to deal with having Sarcoidosis but knowing I have spots on my brain,nerves and the things that can occur having it in this area make me scared.I am scheduled to take three neurological test the first week in June.Pray for me and I'm glad to know there are people that understand my fears and pain.Thanks for being there.jackie <shadowme810 (AT) verizon (DOT) net> wrote: Madonna That is excellent advise. I hope you don't mind if I use it too, I get the flare-ups with the ileitis and they pump Iv into me for 3 days a half hour a day. It helps and I too am on Method and prednisone. This is Jackie from WI [sPAM] Re: neurosarcoidosis Hi Cherisse,I as well, have sarcoid on the optic nerve; my doctor, Carleen Lowder of the Cole Vision Eye Center at the Cleveland Clinic calls it UVEITIS.In order to treat the inflammation, I had to take steroid eye drops every fifteen minutes at first, incrimentally that was reduced and now I do not take the

drops at all, however, to calm all of my symptoms down, I take methotrexate, prednisone and it is okay, but the weight gain is hell. I am fat anyway.Here is what I suggest: stay on course with your doctor and ask questions, keep a journal and take notes of all your experiences. Use this group to explore and read about others experiences to help you deal with what you are going through. This group is awesome.Also I have found that stress is a big part of my flareups and also keeping my potassium up to par is good too.Best of luck to you and stay positive.Madonna HELEN HELEN HELEN