Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thanks for the note. I did look up the link you sent. None of the doctors I have seen have ever mentioned that Guillen Barre you found. I know that my ANA has been checked several times throughout all of this because when these sypmtoms started in August they thought I had Lupus, forgot to mention that all my hair fell out as well. So that prompted them towards Lupus, but said I shouldnt have it if my ANA are ok. He ordered chest xray and blood work this time when he mentioned neurosarcoidosis...what is it they will find in my xray or blood if it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Thanks for the note. I did look up the link you sent. None of the doctors I have seen have ever mentioned that Guillen Barre you found. I know that my ANA has been checked several times throughout all of this because when these sypmtoms started in August they thought I had Lupus, forgot to mention that all my hair fell out as well. So that prompted them towards Lupus, but said I shouldnt have it if my ANA are ok. He ordered chest xray and blood work this time when he mentioned neurosarcoidosis...what is it they will find in my xray or blood if it is? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Tammy, if you have sarcoidosis, generally it shows in the lungs in 85% of all that get it. Your lungs would have a " ground glass " appearance. Instead of being clear black, they'd have alot of white (like looking thru glass that has been ground, but not polished). The blood work was probably for elevated ACE levels (angiotension converting enzymes) but all that says is you have some form of systemic inflammation. Sarc does not have any specific blood test that says yep, it's sarc. It is truly a diagnosis of ruling out all the other auto-immune diseases ad going from there. If your lungs look icky-- then they may do a bronchoscopy and that would give them tissue to look at determine if it is sarcoidosis. It really is the easiest way to find sarcoidosis-- and the least intrusive. It sounds like you've got a good doc that is going to figure out what is going on-- and this is wonderful! Blessings to you, Tracie NS Co-owner/moderator --- Tammy wrote: > Thanks for the note. I did look up the link you > sent. None of the > doctors I have seen have ever mentioned that Guillen > Barre you found. > I know that my ANA has been checked several times > throughout all of > this because when these sypmtoms started in August > they thought I had > Lupus, forgot to mention that all my hair fell out > as well. So that > prompted them towards Lupus, but said I shouldnt > have it if my ANA are > ok. He ordered chest xray and blood work this time > when he mentioned > neurosarcoidosis...what is it they will find in my > xray or blood if it > is? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Tammy, if you have sarcoidosis, generally it shows in the lungs in 85% of all that get it. Your lungs would have a " ground glass " appearance. Instead of being clear black, they'd have alot of white (like looking thru glass that has been ground, but not polished). The blood work was probably for elevated ACE levels (angiotension converting enzymes) but all that says is you have some form of systemic inflammation. Sarc does not have any specific blood test that says yep, it's sarc. It is truly a diagnosis of ruling out all the other auto-immune diseases ad going from there. If your lungs look icky-- then they may do a bronchoscopy and that would give them tissue to look at determine if it is sarcoidosis. It really is the easiest way to find sarcoidosis-- and the least intrusive. It sounds like you've got a good doc that is going to figure out what is going on-- and this is wonderful! Blessings to you, Tracie NS Co-owner/moderator --- Tammy wrote: > Thanks for the note. I did look up the link you > sent. None of the > doctors I have seen have ever mentioned that Guillen > Barre you found. > I know that my ANA has been checked several times > throughout all of > this because when these sypmtoms started in August > they thought I had > Lupus, forgot to mention that all my hair fell out > as well. So that > prompted them towards Lupus, but said I shouldnt > have it if my ANA are > ok. He ordered chest xray and blood work this time > when he mentioned > neurosarcoidosis...what is it they will find in my > xray or blood if it > is? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Did your hair grow back??? Cause my sister Diane, is going through the same thing right now and the docs are trying to figure out just what she has. Her hair is falling out and she's so depressed about it. She's a beautiful, and I do mean beautiful woman and it's so hard for her to go to work everyday like that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, fatigue, weight loss. Her husband thinks she's making a mountain out of a molehill. BonnieBCreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Did your hair grow back??? Cause my sister Diane, is going through the same thing right now and the docs are trying to figure out just what she has. Her hair is falling out and she's so depressed about it. She's a beautiful, and I do mean beautiful woman and it's so hard for her to go to work everyday like that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, fatigue, weight loss. Her husband thinks she's making a mountain out of a molehill. BonnieBCreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank you Tammy -- In Neurosarcoidosis , quiltenbe@... wrote: > > Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank you Tammy -- In Neurosarcoidosis , quiltenbe@... wrote: > > Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Tammie, I know how you feel, and many of us do, about 5 years ago I was feeling much like you feel now, driving and hour one way to do many tests but no treatment, and in the end the " specialist " sill not sure if It's neurosarc or not, even though I had a biopsy that proved Sarcoidosis. I just called my local doctor who had me go to the specialist and told him I could not take it anymore, and we got into see him the next day and he started me on Methotrexate, which has proven to be helpful up until recently when the pain etc, returned, now I am waiting again only this time it is on the Insurance company to OK a medication that would help me, my doctor was able to get on top of the pain right away this time, but the legs are getting weaker and weaker and fear they may just stop, at times they do. I tell you this so you know you are not alone, It just doesn't seem right to have to suffer in pain, but we do, and some days are better then others. I will keep you in my prayers that relief is in sight. Marl a My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank you Tammy -- In Neurosarcoidosis , quiltenbe@... wrote: > > Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Tammie, I know how you feel, and many of us do, about 5 years ago I was feeling much like you feel now, driving and hour one way to do many tests but no treatment, and in the end the " specialist " sill not sure if It's neurosarc or not, even though I had a biopsy that proved Sarcoidosis. I just called my local doctor who had me go to the specialist and told him I could not take it anymore, and we got into see him the next day and he started me on Methotrexate, which has proven to be helpful up until recently when the pain etc, returned, now I am waiting again only this time it is on the Insurance company to OK a medication that would help me, my doctor was able to get on top of the pain right away this time, but the legs are getting weaker and weaker and fear they may just stop, at times they do. I tell you this so you know you are not alone, It just doesn't seem right to have to suffer in pain, but we do, and some days are better then others. I will keep you in my prayers that relief is in sight. Marl a My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank you Tammy -- In Neurosarcoidosis , quiltenbe@... wrote: > > Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Tammy, Please don't say sorry for going on and on. This is a safe place where you can go on and on and on and on. We all do. You are not alone. We are all in this together. Even if your diagnosis isn't neurosarcoidosis. I know how frustrating it is not to have a diagnosis. The first neurologist I saw had no idea what was wrong and sent me to one at a research hospital. One of the first questions the second neurologists nurse asked me was "was your diagnosis made in the same year that your symptoms started?" I told her I didn't have a diagnosis and I thought that was a crazy question. I have come to find out now (a year later) that it wasn't a crazy question. Pinning down the diagnosis takes a long time sometimes. The third neurologist I saw is the one that said it's neurosarcoidosis. I say all that to encourage you to hang in there. Don't get discouraged. Keep pressing in. Someone will figure it out and help you. I will be praying that it will be figured out quickly and that you get relief soon. You are going through so much right now. We are here for you! Please hang in there and remember that you aren't alone! FYI- Plaquenil helped decrease my pain a lot. My neuologist tried it because he said he had a patient before that had severe headaches and it took them away. It works well for me too. Everyone's different, but just thought that might be a nugget of info to keep in the back of your head for future refrence. You are in my prayers! CathyTammy wrote: My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank youTammy -- In Neurosarcoidosis , quiltenbe@... wrote:>> Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB> > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Tammy, Please don't say sorry for going on and on. This is a safe place where you can go on and on and on and on. We all do. You are not alone. We are all in this together. Even if your diagnosis isn't neurosarcoidosis. I know how frustrating it is not to have a diagnosis. The first neurologist I saw had no idea what was wrong and sent me to one at a research hospital. One of the first questions the second neurologists nurse asked me was "was your diagnosis made in the same year that your symptoms started?" I told her I didn't have a diagnosis and I thought that was a crazy question. I have come to find out now (a year later) that it wasn't a crazy question. Pinning down the diagnosis takes a long time sometimes. The third neurologist I saw is the one that said it's neurosarcoidosis. I say all that to encourage you to hang in there. Don't get discouraged. Keep pressing in. Someone will figure it out and help you. I will be praying that it will be figured out quickly and that you get relief soon. You are going through so much right now. We are here for you! Please hang in there and remember that you aren't alone! FYI- Plaquenil helped decrease my pain a lot. My neuologist tried it because he said he had a patient before that had severe headaches and it took them away. It works well for me too. Everyone's different, but just thought that might be a nugget of info to keep in the back of your head for future refrence. You are in my prayers! CathyTammy wrote: My hair is growing back in slowly...but not completely. Where it fell out in clumps, it is still a little sparse. I had to wear a wig from about October on. Now it just looks like I have a really, really short hairdo with hair that is thinning in spots! And to think when that symptom appeared I thought it was devastating. To only have that one back, and not the severe headaches, sore painful , weak muscles, dizziness, unsteady walk! I go to the doctor in one week...hopefully with answers from my lab work and chest x ray. I was just talking to my husband, telling him how I feel like giving up...I mean, how long is a person supposed to be in pain everyday with no medication to at least try to help. My lifestyle is so different from how it used to be, and somedays I am in so much pain I just wonder why 7 months have gone by with no answers, no one giving me any hope, any pain relief. Some days my head hurts so bad I wonder if I will make it to the next day. Or somedays I can't get up out of a chair because my legs wont work...How long before some doctor tells me he can give me some medicine to help me. Please, everyone, pray for me that I get some results next Thursday at the doctor and he will know what is wrong and put me on some medicine. It is hard enough to have a huge lifestyle change, but not even knowing why makes it hard to accept the change. Sorry for going on and on, just dont feel like I have anyone who understands...my husband tries but cant quite get it like someone who lives everyday in pain. Thank you to all who have read what I have to write and who have written to me...especially since I havent even gotten a diagnosis yet, just that neurosarc is a possibility, yet you all have welcomed me. Thank youTammy -- In Neurosarcoidosis , quiltenbe@... wrote:>> Did your hair grow back??? Cause my sister Diane, is going through the same > thing right now and the docs are trying to figure out just what she has. Her > hair is falling out and she's so depressed about it. She's a beautiful, and I > do mean beautiful woman and it's so hard for her to go to work everyday like > that. They think it's Lupus of Sjogrens or sarc. Her rheumo doc told her that > our genes are awful. Her other symptoms are extremely dry eyes, mouth sores, > fatigue, weight loss. Her husband thinks she's making a mountain out of a > molehill. BonnieB> > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001)> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
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