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
I'm starting my 6th year with sarcoidosis . Been to best doctors locally, been to Mayo and have tried all possible meds. Nothing has helped!! Nerves to my eyes are gone. Can barely see . Deaf in one ear. Joint pain. Fatigued . Neuropathy in legs . Abdomen hurts continually. Low grade fever off and on. About the only place clear is my lungs . No sign of it there. A year ago applied and was approved for disability with no problem. Hate to share , but no luck here !!<br><br>
Hi @chesneydell1965. I moved your message to this discussion, so you’re able to connect with others who also have Sarcoidosis. Please meet @sebley12 and @briansr, as well as @ddade19, who has neurosarcoidosis.
@rickys, welcome back to Connect. Sorry to hear about your recent news. Know that the Connect community is here for you.
Does the group have tips or recommendations to share with @chesneydell1965?
Hi @chesneydell1965. I moved your message to this discussion, so you’re able to connect with others who also have Sarcoidosis. Please meet @sebley12 and @briansr, as well as @ddade19, who has neurosarcoidosis.
@rickys, welcome back to Connect. Sorry to hear about your recent news. Know that the Connect community is here for you.
Does the group have tips or recommendations to share with @chesneydell1965?
Hi @chesneydell1965. I moved your message to this discussion, so you’re able to connect with others who also have Sarcoidosis. Please meet @sebley12 and @briansr, as well as @ddade19, who has neurosarcoidosis.
@rickys, welcome back to Connect. Sorry to hear about your recent news. Know that the Connect community is here for you.
Does the group have tips or recommendations to share with @chesneydell1965?
Colleen Young, Connect Director | @colleenyoung | Aug 24, 2016
"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'm sure @chesneydell1965 will appreciate hearing from someone who is travelling the path before her/him. Interesting how sarcoidosis has spared your lungs, and it is where the disease started for Chesney.
"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?
The biggest thing right now is chest pain, heart checked out fine. I have alot of swollen lyphnods in the stomic area, sept 29 i get a endoscopy and a colonostapy til then nothing they can do they say.. second is loss of balance i now use a walker i have cuts scrapes bruises from falling... the 3rd big thing is the nuropathy pain in my feet legs and hands, the next would be sever head aches confussion fatigue.. is this what you ment? My doctors have been zero help
"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?
Thanks for sharing these symptoms. You may also be interested in these discussions:
- Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
- Falling for no apparent reason http://mayocl.in/2bTkbMm
They are not specific to sarcoidosis, but you'll meet members managing similar symptoms.
"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?
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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
I'm starting my 6th year with sarcoidosis . Been to best doctors locally, been to Mayo and have tried all possible meds. Nothing has helped!! Nerves to my eyes are gone. Can barely see . Deaf in one ear. Joint pain. Fatigued . Neuropathy in legs . Abdomen hurts continually. Low grade fever off and on. About the only place clear is my lungs . No sign of it there. A year ago applied and was approved for disability with no problem. Hate to share , but no luck here !!<br><br>
Hi @chesneydell1965. I moved your message to this discussion, so you’re able to connect with others who also have Sarcoidosis. Please meet @sebley12 and @briansr, as well as @ddade19, who has neurosarcoidosis.
@rickys, welcome back to Connect. Sorry to hear about your recent news. Know that the Connect community is here for you.
Does the group have tips or recommendations to share with @chesneydell1965?
Thank you
What is neurosarcoidosis
"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.
Sarcoidosis, on the other hand, is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. (From Mayo Clinic http://www.mayoclinic.org/diseases-conditions/sarcoidosis/home/ovc-20177969) @rickys @sebley12 and @briansr can tell you more in this department.
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?
Thanks for coming back to share on Connect, Ricky! You'll see Connect has changed quite a bit since you last visited. Neuropathy is a huge topic on Connect. You may wish to join this discussion https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
I'm sure @chesneydell1965 will appreciate hearing from someone who is travelling the path before her/him. Interesting how sarcoidosis has spared your lungs, and it is where the disease started for Chesney.
The biggest thing right now is chest pain, heart checked out fine. I have alot of swollen lyphnods in the stomic area, sept 29 i get a endoscopy and a colonostapy til then nothing they can do they say.. second is loss of balance i now use a walker i have cuts scrapes bruises from falling... the 3rd big thing is the nuropathy pain in my feet legs and hands, the next would be sever head aches confussion fatigue.. is this what you ment? My doctors have been zero help
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1 ReactionThanks for sharing these symptoms. You may also be interested in these discussions:
- Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
- Falling for no apparent reason http://mayocl.in/2bTkbMm
They are not specific to sarcoidosis, but you'll meet members managing similar symptoms.
Any ideas right now is gold