Really uplifting to know there are others who are doing well. I think the initial key to success is having excellent docs who treat each patient as an individual based on test results.

@dsisko, @shani, and all...Dsisko, you are surely blessed. I've written my story in a prior message, but I'll simply say I didn't have the illness nor the life you enjoyed with Sarcoidosis.

I was diagnosed in 1987 at Mayo Florida with a lung biopsy. I was treated by a wonderful Rheumatologist and Dermatologist, treating the lung Sarcoid and the large, painful, yucky nodules on my shins. I'd been ill for months with increasing difficulty functioning, due to the body pain that didn't respond to anything from docs to that point, fibromyalgia that increased all the symptoms of the sarcoid, and much more. My feet and legs were so swollen I couldn't wear shoes, making it very tough to walk and certainly impairing my working ability. I couldn't sleep due to pain and other discomforts. I was coughing constantly, and so much more...

After the biopsy, I was on high doses of Prednisone for 8 months, when I began to show neurological issues caused by the med. That hard smack with Prednisone put the sarcoid into remission, for a while. It came back in some form every few years or so, treated with low doses of Prednisone usually, antibiotics, and an inhaler. I functioned, worked in retirement communities in our city in administration, and even opened and ran my own gift shop for 10 years while raising a small child as a divorced woman. I had a very tough time managing and leading a life with some kind of normalcy, whatever that may be.

It was a very hard life, but I did it. I survived and my son went to college, and law school and became an excellent lawyer with his own practice. But, I was never able to lead a 'normal' life, as I was in constant pain, had multiple additional illnesses, several autoimmune illnesses, lost my balance, and used a cane beginning in my 50s. Life with Sarcoid and after heavy steroids was difficult.

The steroids caused many additional issues throughout my life and today. But, they put the Sarcoid in remission. I was better, able to live life and raise a child. I pushed through so many hard days to make it and am very proud of my inner strength and determination that got me to Mayo again, in 2019, after several bad years falsely diagnosed with MS.

Now, let me tell you I'm better now than in all those years, due to Mayo Clinic and my Connect friends and the knowledge gained from them. So many wonderful folks with so many challenges and so much love for each other. How could I not be better?

I have many more limitations now than I want, but at age 76, I can still walk, don't have MS, do have Parkinsonism and some tremors, have an occasional Sarcoid issue...currently have rash issues with nodules and deep pain, burning on both arms, shins. Have low ferritin issues that cause a lot of problems for me daily, but I'm dealing with whatever comes along.

I have excellent care at Mayo, from a wonderful team of caring, kind staff and physicians, and I often make the trip to the Clinic an outing I enjoy, most of the time. The campus is lovely. Beautiful live oak trees, palms, fresh flowers year round, lovely ponds and fountains. The art is fantastic. The smiles are contagious. I get exercise when able by walking the halls with my walker, corridors connecting the buildings lined with walls of glass, and art that brings me joy. Add good music and God's guidance and peace, and I'm a much better person now.

We with Sarcoid have very individual experiences. I'm blessed to have gotten the lungs under some kind of control, at least for years. My immune system is a mess. No dementia yet. Pain, yes. Unbearable? No! I'm off all the meds doctors outside Mayo put me on for so many years...Gabapentin, Oxycodone, Lyrica, heavy Ibuprofen, and others.

I take Cymbalta for fibromyalgia and anxiety which works well for me. Robaxin as a muscle relaxant. Requip for RLS. Use a Bi-pap with O2 at night, Prazosin for PTSD nightmares, and a few others. No heavy pain meds for years. I use medical marijuana tincture at night for anxiety and pain relief. It's 1x1, CBDxTHC. It works wonders.

I'm a happy, older woman who can still climb her 14 stairs to get to the bedrooms and showers. I also have a little mini kitchen set up in one bedroom so on the days I'm not able or don't choose to go downstairs, or just want some yogurt and granola for breakfast upstairs, that has made my life much easier and more enjoyable. I have options. I'm not physically healthy, but I can still look good, dress up and go out at times and enjoy this beautiful world.

Be well, be blessed, and enjoy the friends you meet on this helpful, encouraging site. It will help you with acceptance of your body, and your situation. You'll learn so much from others who've met your challenges. And, perhaps you can pass it on to someone who needs the uplifting words to know she's not alone in this crazy journey. elizabeth