Im new in April i was told i have sarcoidosis of the lungs no scaring of the joints and skin. Looking for anwers scard i would like information, who can show a rookie the ropes
Hi,
Sounds awful. Fear however won't help. Maybe you should tell your doctor about how upset you are and get something to help you approach this more calmly.
What treatments have you had and what medications, if any, are you on?
When were you diagnosed and where?
Looks like the usual treatments are immuno suppressants and that the course may be varying or even remitting. http://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/treatment/txc-20177973
Looks like one of those vague autoimmune conditions that is not well understood.
Having Mac and Sarcoidosis there is still some confusion about which is causing some of my cavitation problem....time will tell I guess. Good luck with your situation. J
Having Mac and Sarcoidosis there is still some confusion about which is causing some of my cavitation problem....time will tell I guess. Good luck with your situation. J
Hi Josephine. My husband has Sarcoid which we had never heard of until he and a neighbor were both diagnosed with it! Since I have MAC, we have started to wonder if he has MAC as well. So sorry you have both! Irene
My husband has both sarcoidosis. And nuerosarcoidosis. I feel very defeated at this point.. i didnt know about nuerosarcoid until i found this blog. And it made sence on how he was acting so we went to see my nuero doct. And here we are im so glad for this blog, it saved my husbands life
"Neurosarcoidosis is a complication of sarcoidosis, in which inflammation occurs in the brain, spinal cord, and other areas of the nervous system." (From Medline Plus https://medlineplus.gov/ency/article/000720.htm) I'm sure @ddade19 can tell you more and what it is like to live with neurosarcoidosis.
Chesneydell - what are your most significant symptoms at the moment, and how are you managing since getting this diagnosis? What are your top questions or concerns at this stage?
I asked you about thid weeks ago. Thank you so much he fit what you send i got him in to the nuero doc. He us in the hospital tiday being treated . Witj out this site. And my belly aching no one would have checked him
"Neurosarcoidosis is a complication of sarcoidosis, in which inflammation occurs in the brain, spinal cord, and other areas of the nervous system." (From Medline Plus https://medlineplus.gov/ency/article/000720.htm) I'm sure @ddade19 can tell you more and what it is like to live with neurosarcoidosis.
Chesneydell - what are your most significant symptoms at the moment, and how are you managing since getting this diagnosis? What are your top questions or concerns at this stage?
You are so right Chesney. What you refer to as "belly aching" can also be called advocating for yourself or your husband. You and he are the most invested in his health. I'm glad that the support you get from Connect members helped give you the strength to advocate for the care you are now getting.
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Hi,
Sounds awful. Fear however won't help. Maybe you should tell your doctor about how upset you are and get something to help you approach this more calmly.
What treatments have you had and what medications, if any, are you on?
When were you diagnosed and where?
Looks like the usual treatments are immuno suppressants and that the course may be varying or even remitting.
http://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/treatment/txc-20177973
Looks like one of those vague autoimmune conditions that is not well understood.
Hope this helps.
Hi @chesneydell1965, I wanted to introduce you to two new members who also have experience with sarcoidosis. Please meet @irene5 and @josephene.
Irene and Josephene, I thought you might appreciate knowing about this ongoing discussion about sarcoidosis.
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1 ReactionHaving Mac and Sarcoidosis there is still some confusion about which is causing some of my cavitation problem....time will tell I guess. Good luck with your situation. J
Hi Josephine. My husband has Sarcoid which we had never heard of until he and a neighbor were both diagnosed with it! Since I have MAC, we have started to wonder if he has MAC as well. So sorry you have both! Irene
What os MAC ?
My husband has both sarcoidosis. And nuerosarcoidosis. I feel very defeated at this point.. i didnt know about nuerosarcoid until i found this blog. And it made sence on how he was acting so we went to see my nuero doct. And here we are im so glad for this blog, it saved my husbands life
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Hug
3 ReactionsMAC stands for Mycobacterium Avium Complex Pulmonary Disease. Members are talking about it here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
I asked you about thid weeks ago. Thank you so much he fit what you send i got him in to the nuero doc. He us in the hospital tiday being treated . Witj out this site. And my belly aching no one would have checked him
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1 ReactionHi ladies im tammi i made this under my hubbys name turns out i use it he dont lol im tammi
You are so right Chesney. What you refer to as "belly aching" can also be called advocating for yourself or your husband. You and he are the most invested in his health. I'm glad that the support you get from Connect members helped give you the strength to advocate for the care you are now getting.