@dsisko, Hello and welcome to Mayo Clinic connect!
Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.
I was diagnosed with sarcoidosis over 18 years ago and likely had it for a good ten years before that. I kept telling the doctors I saw that I couldn't breathe and they kept telling me that I didn't have asthma. No, I didn't, I had sarcoidosis which a good pulmonologist diagnosed. We talked about options for treatment and I said I wasn't excited about the side effects of prednisone. He wrote a doctors though out the world about outcomes when a patient takes the drug verses when one doesn't take it at all. After this analysis and the r view of studies, the conclusion was that there was no difference in outcome after 5 years between patients that took prednisone and those that didn't. My doctor and I decided that I would not take any drugs. I frequently went in for lung tests. The disease progressed for a few years and then went into remission. I still struggle with climbing hills, steps, running, and strenuous activity. To this day, however, I am convinced that this was the right course of action for me. It likely is not right for others but it is my experience. An article from the National Institute of Health "Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past. The striking difference in relapse rate between treated and untreated patients suggests that patients with disease that would later be severe and protracted were almost unerringly identified early in their course. One explanation is that severe presenting symptoms portend a protracted and recurrent course; an alternative explanation is that corticosteroids contributed to the prolongation of the disease by delaying resolution. "
I hope this helps.
@dsisko, Hello and welcome to Mayo Clinic connect!
Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.
@dsisko, Hello and welcome to Mayo Clinic connect!
Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.
Keep looking to connect with others in the community. You are doing a good job. 🙂 We will also continue to help connect you with other members who are also diagnosed with neurosarcoidosis and here to talk and support each other. New members are coming to the community every day.
@dsisko, Thank you for offering to help with sharing your experiences- That would be great help to @chesnedell1965.@ddade19, we would be grateful for any information you can offer as well. Thank you!!
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
walking has been greatly beneficial,, hydrocodone (5 or 10 mg), marijuana (medical otherwise), heating pad. I also have a service dog and by playing with him or grooming him helps take my mind off the pain. I've also taken up some hobbies that also helps distract me.
No, I now have to take insulin and blood pressure meds my sarcoidosis is active according to my last CT scan. So many test, scans and surgeries but the pain is still here. I am now being told that he may try an infusion since nothing else has worked. I started off with 5 nodules, today I have too many to count on both lungs. Two inhalers 8 pills in the morning and 3 pills at night 2 injections per day. Headaches and pain every where. I just need answers.
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No one really answers am I doing something wrong or is this computer generated and not real
When I read this I asked my husband when he became a mayo connect member! Identical situation!
Certainly. I know my limitations now and live life quite fully. I'd be happy to help with my story and experiences if it would be helpful to others.
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1 ReactionDoes anyone here have neurosarcoidosis
I have Neurosarcoid
Can you tell me about your experience ? How long you have had it ? Please
@chesneydell1965, we are here and real.
Keep looking to connect with others in the community. You are doing a good job. 🙂 We will also continue to help connect you with other members who are also diagnosed with neurosarcoidosis and here to talk and support each other. New members are coming to the community every day.
@dsisko, Thank you for offering to help with sharing your experiences- That would be great help to @chesnedell1965.@ddade19, we would be grateful for any information you can offer as well. Thank you!!
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1 Reaction8 yrs. Do u have Neurosarcoid
walking has been greatly beneficial,, hydrocodone (5 or 10 mg), marijuana (medical otherwise), heating pad. I also have a service dog and by playing with him or grooming him helps take my mind off the pain. I've also taken up some hobbies that also helps distract me.
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Like -
Helpful -
Hug
1 ReactionNo, I now have to take insulin and blood pressure meds my sarcoidosis is active according to my last CT scan. So many test, scans and surgeries but the pain is still here. I am now being told that he may try an infusion since nothing else has worked. I started off with 5 nodules, today I have too many to count on both lungs. Two inhalers 8 pills in the morning and 3 pills at night 2 injections per day. Headaches and pain every where. I just need answers.