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Figuring out autoimmune disease where to start?

Posted by cberner85 @cberner85, 15 hours ago

I have struggled with whole body inflammation that gets triggered by emotional or environmental stress. Muscle weakness and overall fatigue. Mental stress also worsens and chronic migraines with this. Have seen neurology but where’s a better place to start to cope so I can get back to daily activities? Not looking just for medication but root cause as well. Family and friends also don’t always believe I have anything going on. I have tried numerous modalities natural and medical including also seeing hormone specialist. Any ideas or anyone else have success with solving this?

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tuckerp | @tuckerp | 10 hours ago
In reply to @cberner85 "He did! Thank you. I should mention I am just under 40 and yes had some..." + (show)
@cberner85

He did! Thank you.
I should mention I am just under 40 and yes had some adrenal insufficiency as well. Perfect. I’ll see if I can find a GP that would be helpful. I did read on another thread that it is hard to get in there with rheumatologist. Sometimes it’s hard to get these tests if everything else looks pretty good it seems.

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Your primary can take you part way. Order the ESR and Sed rate. But as jeff mentioned its going to be very hard to get a diagnosis at your age. I am on 2 different PMR sites and even though the medical field likes to call it a plus 50 disease it is not limited to plus 50. Many younger people have it.

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cberner85 | @cberner85 | 9 hours ago
In reply to @tuckerp "jeff97 gave a pretty detailed explanation. Google all you can on it. As jeff mentioned the..." + (show)
@tuckerp

jeff97 gave a pretty detailed explanation. Google all you can on it. As jeff mentioned the fact that prednisone works is sometimes a diagnosis. As a previous pmr sufferer I was diagnosed by rheumatologist at Mayo. Prednisone at the right dose(20mg to start) is a miracle. Dont get fooled by the steroids though. Prednisone can become the enemy. PMR can last for years and most people cannot get off the steroids. google prednisone and adrenal insufficiency.

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Oh, did you get relief with the prednisone and later able to wean off and heal?

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tuckerp | @tuckerp | 9 hours ago
In reply to @cberner85 "Oh, did you get relief with the prednisone and later able to wean off and heal?" + (show)
@cberner85

Oh, did you get relief with the prednisone and later able to wean off and heal?

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Yes . I was diagnosed in May 2021. It took me about 6 months to figure out what it was. I had xrays and ct scans. All they showed was inflammation. Then I actually self diagnosed myself just as your doing. I was 68. I tried prednisone and was better in 4 hours. Then I had to get Mayo to agree. They did mostly by ruling out everything else. I can take years for some to burn out the PMR. I started on 20mg and was able to decrease to 10mg within a week. Then I spent 6 months at 10mg then weaned to zero over the next month. I understood the pitfalls taking prednisone so I was determined to get off. My PMR has not returned. I had almost no pain on 10mg prednisone. Then some pain I think from adrenal insufficiency while tapering to zero but I just held course. As Jeff said search the PMR section of Mayo clinic. years of good advice.

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