Figuring out autoimmune disease where to start?

Posted by cberner85 @cberner85, 1 day 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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@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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@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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@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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I have Crohn's disease. I found a functional doctor they can also go by holistic doctors. I also worked 6 months with a dietian. I could not have figured out how to treat Crohn's without out their knowledge and testing.

You are at a point you need to seek out a functional doctor. Autoimmune disease are complex. Medical Doctors say there is no known cause. That I'm my opinion is because the causes are unique to each person. And it takes Discovery to figure out where to begin to reverse the inflammation caused by the autoimmune diseases. Medical doctors don't have the training to do that. All they have the training to do is to prescribe drugs immunosuppressant drugs.

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Since I don’t know you or your whole story, I’ll begin by telling you mine. I had 18” of my colon re moved in April of 2022 due to severe diverticulitis. The surgery itself was successful, but about 4-5 weeks after the surgery, my body began to bloat and I had inflammation throughout my body, especially on my ankles, buttocks, upper under arms and my belly. This was not normal for me. I saw my surgeon and he directed me to my primary care doctor. After seeing him, I asked him to run a Thyroid blood panel on me. To his and my surprise, my Thyroid numbers were off the charts for Hashimoto’s and Hypothyroidism. Never before did I have these diseases. He immediately put me on Synthroid 112 mcg and Cytomel 5 mcg. I began to see improvement almost immediately! I then was diagnosed in December of 2022 with Covid and 2 days into that I lost my taste and smell. It is January 2025 and I still don’t have my taste or smell back! Needless to say, it’s been awful! I am struggling…I’ve had 7 Stellate Ganglion Block Injections and none have brought back my taste or smell, but did actually help with my PTSD. Fast forward to today, I have cut my Synthroid to 56 mcg daily and am off the Cytomel. I feel good most days, but not having taste or smell does drag me down on occasion. I have also cut out eating Gluten, Dairy and Soy as they were the culprits causing body inflammation and I have lost about 15 lbs. I also had a food sensitivity test done and have cut out many of those foods as well. It’s been a long journey and I do hope you find some relief soon. Good luck!

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@denisestlouie

I have Crohn's disease. I found a functional doctor they can also go by holistic doctors. I also worked 6 months with a dietian. I could not have figured out how to treat Crohn's without out their knowledge and testing.

You are at a point you need to seek out a functional doctor. Autoimmune disease are complex. Medical Doctors say there is no known cause. That I'm my opinion is because the causes are unique to each person. And it takes Discovery to figure out where to begin to reverse the inflammation caused by the autoimmune diseases. Medical doctors don't have the training to do that. All they have the training to do is to prescribe drugs immunosuppressant drugs.

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Thank you! I started with functional medicine, chiropractic, herbalist but have been thinking about looking into a doctor/functional medicine who specializes in latent diseases. I’ve had Lymes mentioned before, which from what I read can look like PMR. I grew up on a farm, hunting etc and did have one event I can remember where I believe a tick bite got missed by a doctor. Didn’t present real typical. I do have the left side weakness and some other things that line up for this.
It would be chronic long term at this point. All this too started happening after a miscarriage 2 years ago and after having Covid at 7 weeks postpartum. Hence all the hormone stuff. I have quite the long long story of every practitioner under the sun…the one thing that has helped at all is a magnesium infusion.
Curious of anyone you’d recommend that is also knowledgeable on Lymes this way and PMR if that’s likely the diagnosis?

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@cberner85

Thank you! I started with functional medicine, chiropractic, herbalist but have been thinking about looking into a doctor/functional medicine who specializes in latent diseases. I’ve had Lymes mentioned before, which from what I read can look like PMR. I grew up on a farm, hunting etc and did have one event I can remember where I believe a tick bite got missed by a doctor. Didn’t present real typical. I do have the left side weakness and some other things that line up for this.
It would be chronic long term at this point. All this too started happening after a miscarriage 2 years ago and after having Covid at 7 weeks postpartum. Hence all the hormone stuff. I have quite the long long story of every practitioner under the sun…the one thing that has helped at all is a magnesium infusion.
Curious of anyone you’d recommend that is also knowledgeable on Lymes this way and PMR if that’s likely the diagnosis?

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I think a rheumatologist can help. Here were the tests they ran on me. Most of these rule out something else.
1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6
15. Pet Scan for cancer.

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