Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8069
Joined: Jul 23, 2014
My husband isvtakibg the same meds also vicodin and is still in awful pain . We filed for disability and was turned down
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.
chesneydell1965
@chesneydell1965
@chesneydell1965
Posts: 43
Joined: 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.
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?
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
Liked by Colleen Young, Connect Director
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8069
Joined: Jul 23, 2014
“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 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.
chesneydell1965
@chesneydell1965
@chesneydell1965
Posts: 43
Joined: 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.
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?
Any ideas right now is gold
JohnWBurns
@johnwburns
@johnwburns
Posts: 298
Joined: Jun 02, 2015
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.
Hope this helps.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8069
Joined: Jul 23, 2014
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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Bidgee
@josephene
@josephene
Posts: 12
Joined: Sep 07, 2016
irene5
@irene5
@irene5
Posts: 405
Joined: Oct 03, 2016
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
chesneydell1965
@chesneydell1965
@chesneydell1965
Posts: 43
Joined: Aug 24, 2016
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
REPLY
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8069
Joined: Jul 23, 2014
What os MAC ?
MAC stands for Mycobacterium Avium Complex Pulmonary Disease. Members are talking about it here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
chesneydell1965
@chesneydell1965
@chesneydell1965
Posts: 43
Joined: 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.
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?
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
Liked by Colleen Young, Connect Director
chesneydell1965
@chesneydell1965
@chesneydell1965
Posts: 43
Joined: Aug 24, 2016
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.
Hi ladies im tammi i made this under my hubbys name turns out i use it he dont lol im tammi
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 8069
Joined: Jul 23, 2014
“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?
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.
@colleenyoung
“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?