Has anyone had a good result with their treatment with very few side effects?
Dear Linda.G - Mayo Clinic has some information available at http://www.mayoclinic.org/diseases-conditions/sarcoidosis/home/ovc-20177969 that may give you some additional background information to help you make an informed decision.
Also, if you are interested in speaking to a physician to get an opinion about the treatment please contact Mayo Clinic here http://mayocl.in/1mtmR63.
I have had sarcoidosis for 18 months. Have not found anything that helps!!
I am sorry to hear that. I have gone back to my Dr a polmonolist and he told me that all my test indicated that my sarcoidosis had not flared up and he told me he would not put me on any medication what with all the side effects. Yes I am having problems with my legs and having a funny feeling going up and down my legs but life goes on and I just keep moving.
I am so absolutely exhausted with my Sarcoidosis which has spread through most of my body. Even my bones and nervous system. It's in my lungs, eyes, all lymph nodes, bones, muscles, skin and even some of my nervous system! Through the last 3 yrs. I have been to SO MANY doctors, hospitals, clinics, surgeries, biopsies, tests of ALL KINDS, blood work, ultra sounds, breathing tests, x-rays, CAT scans, MRI's, PET scans, etc....!!! My 3 children have had to stay with my mom and dad for 2 yrs now because I can barely take care of my self! Thankfully my parents are wonderful and only live 2 miles away. I see them as much as I can. I have been picking them up from school so far this year and get to feed them & help them with homework. I just can't be counted on, I just can't function some days. My immune system has been pretty much gone for 3 or 4 yrs now. It gets down to 0.6 sometimes. When I catch a simple cold or another bug, I'm down for 2 to 3 weeks! I'm sorry I made this so long, I really needed to vent. I am familiar with about any medicine known to man unfortunately! I'm 35, married and really need to talk to people who understand where I am at in life right now. My husband is a good man but has NO IDEA how to deal with ANY of my illnesses. He pretty much shut down a couple yrs ago and is EXTREMELY rude and has zero empathy for me or my illnesses! Hopefully I can help one of you out there with advice and would really love to get some feedback from anyone in my situation... I did spend a couple weeks at the Cleveland Clinic in Cleveland, OH back in December 2011. I didn't get all the treatment I feel I needed. It is very much like the Mayo Clinic. It's ranked #1 in the world in a lot of areas. I am thinking about trying out the Mayo Clinic. Please give me some feedback if you have been a patient there. Have a good night and God bless. - Robyn
I have sarcoid in my lungs and joints, with that being said I would like to know if anyone else is dealing with this as well that can tell me what helps with the joint pain
Hi @rayrachel, welcome to Connect. I'm Alyse, and I'm one of the community moderators here. I moved your message to this discussion thread so that you can connect with other community members talking about sarcoidosis. I'm also tagging @stjudemom and @tanyarm who have posted more recently. @tanyarm how is your partner doing?
@rayrachel what have you being doing to date to help the joint pain?
My husband isvtakibg the same meds also vicodin and is still in awful pain . We filed for disability and was turned down
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 @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?
"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?
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
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