Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Hi Everyone, I was wondering if you start out with nodules in your lungs and that demon sarcoid goes to the brain or spine and effects them?? There is so much the rhuemotoligist didn`t tell me!! Maybe she thought she would scare me more, like the nodules in my lungs didn`t already scare me till I knew that it wasn`t Cancer. This seems to be worse then Cancer because I think peple endure it so much longer.Of course I would feel a little bit better if I hadn`t been in a head on car accident in `93, punctured my right lung when 2 ribs broke and have scar tissue in right lung from that.It did get me to quit smoking thou. And sometimes I go for 3 days without using my inhaler. Does anyone else have alot of sinus infections, middle ear infections, vertigo at the same time? How about feeling cold all the time like you have a fever ALL the time, a slight cough, choke easily, and nose always runs in morning?? I would appreciate any help I can get since my husband and 3 grown children have no idea what I am going thru or feeling. My husband is good about cleaning the house but he is still in denial. He doesn`t like to think about how bad I could be in the future. But I am an optimist, always have been and always will be.I believe God doesn`t give us more than we can endure. Can anyone tell me if you can collect social security disability with this disease? I guess you have to wait a long time to get it thou. Thanks so much for letting me let off some steam. This is so much better then putting my fist in the wall considering it is dried up and cracked from extreme dry skin.May God Bless each and everyone of you, and we need to pray for each other for a cure. Liz P.S. You know, no one has ever gone on a talk show and discussed this disease so people know about it.I did write to Oprah, but never heard back!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Yes I have Neurosarcoid in the lungs , brain, spinal cord, liver, r-adrenal gland, spleen. so yes if you have sarcoid in your lungs it can go other places in your body. It is just more rare than lung sarcoid. I am sorry to hear you are having such a hard time When i applied for my SSD it took 9 months but it was approved. but most people are denied the first time. I guess I was one of the lucky ones, but don't let that scare you and not apply, if you have documentation from your dr for Sarcoid/Neurosarcoid you will get approved. Depending if you have to get a lawyer or not. like i said i didn't have to.. thank Goodness. if you need anymore info on neurosarcoid just ask. many hugs and blessings and a pain free day Who's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 You and I must have met in a past life.... HAHA! My sarcoid has never gone to my lungs untill now. It started in the brain moved to the eyes down the spinal column then the thyroid and then the lungs. I dont have it bad in the lungs but definetly starting. I have had two major operations to determine wether or not this crap is sarcoid or cancer. First they told me that it was lymphoma and then it was thyroid cancer..... Its not either. Its sarcoid taking over.... URG.... My family doesnt understand and my husband doesnt have any understanding of whats going on he just knows that I complain all the time.....As for the sinus infections and the vertigo and the middle ear infections that has becomes a part of my daily life. Not a day goes by that I am not dizzy or upside down with a headache ear pain or the spins....... That has been happening to me for about 5 years... They only diagnosed Sarcoid in Sept 07 but the docs think that I have had it for years... I never went to the doctors because I was in school and I never had any health insurance. I finally went to the doctor after I got married and had the hubbys insurance.... Good luck to you and keep in touch... gotta go take care of the kids wrote: Hi Everyone,I was wondering if you start out with nodules in your lungs and that demon sarcoid goes to the brain or spine and effects them?? There is so much the rhuemotoligist didn`t tell me!! Maybe she thought she would scare me more, like the nodules in my lungs didn`t already scare me till I knew that it wasn`t Cancer.This seems to be worse then Cancer because I think peple endure it so much longer.Of course I would feel a little bit better if I hadn`t been in a head on car accident in `93, punctured my right lung when 2 ribs broke and have scar tissue in right lung from that.It did get me to quit smoking thou. And sometimes I go for 3 days without using my inhaler.Does anyone else have alot of sinus infections, middle ear infections, vertigo at the same time? How about feeling cold all the time like you have a fever ALL the time, a slight cough, choke easily, and nose always runs in morning??I would appreciate any help I can get since my husband and 3 grown children have no idea what I am going thru or feeling. My husband is good about cleaning the house but he is still in denial. He doesn`t like to think about how bad I could be in the future. But I am an optimist, always have been and always will be.I believe God doesn`t give us more than we can endure. Can anyone tell me if you can collect social security disability with this disease? I guess you have to wait a long time to get it thou. Thanks so much for letting me let off some steam. This is so much better then putting my fist in the wall considering it is dried up and cracked from extreme dry skin.May God Bless each and everyone of you, and we need to pray for each other for a cure. LizP.S. You know, no one has ever gone on a talk show and discussed this disease so people know about it.I did write to Oprah, but never heard back!!! 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 February 10, 2008 Report Share Posted February 10, 2008 Hi Liz, I do have sinus problems a lot, and pretty sure there are others that do too, my sinus have a thickened lining, and I was told this is the Sarc, I do sinus rinse just about every day, (should do it every day) and still get the infections. I wake up with a productive cough every morning and cough until there is nothing left to cough up. And have not had any ear infections, and only have trouble with vertigo when I don't drink a lot of water, which I have to do every day, and we all should. I have a funny thing about the cold and the heat, if I am exposed to cold, then I get very very cold, and when I get hot, I get very very hot, and not hot flashes, I get those too, but not so bad when I take my Calcium and Mgsm. My biggest hurdle right now is walking. glad you found this site helpful, this is the best support group you will find, we are like family. and yes there are many of us here praying for each other, and I do believe that some people have written to Oprah with no response. God Bless, Marla Hi Everyone, I was wondering if you start out with nodules in your lungs and that demon sarcoid goes to the brain or spine and effects them?? There is so much the rhuemotoligist didn`t tell me!! Maybe she thought she would scare me more, like the nodules in my lungs didn`t already scare me till I knew that it wasn`t Cancer. This seems to be worse then Cancer because I think peple endure it so much longer.Of course I would feel a little bit better if I hadn`t been in a head on car accident in `93, punctured my right lung when 2 ribs broke and have scar tissue in right lung from that.It did get me to quit smoking thou. And sometimes I go for 3 days without using my inhaler. Does anyone else have alot of sinus infections, middle ear infections, vertigo at the same time? How about feeling cold all the time like you have a fever ALL the time, a slight cough, choke easily, and nose always runs in morning?? I would appreciate any help I can get since my husband and 3 grown children have no idea what I am going thru or feeling. My husband is good about cleaning the house but he is still in denial. He doesn`t like to think about how bad I could be in the future. But I am an optimist, always have been and always will be.I believe God doesn`t give us more than we can endure. Can anyone tell me if you can collect social security disability with this disease? I guess you have to wait a long time to get it thou. Thanks so much for letting me let off some steam. This is so much better then putting my fist in the wall considering it is dried up and cracked from extreme dry skin.May God Bless each and everyone of you, and we need to pray for each other for a cure. Liz P.S. You know, no one has ever gone on a talk show and discussed this disease so people know about it.I did write to Oprah, but never heard back!!! -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
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