Undiagnosed auto immune disease

Posted by lisabeans @lisabeans, Feb 13, 2017

I have auto immune issues but am still undiagnosed. I have joint and muscle pains sometimes to the point that holding my son’s hand hurts. I have sensitivity to light and sun where I get very dizzy, nauseous and my face gets red on my cheeks and nose. I have an positive ana 1:160 homogenious. My rheumy started me on plaquanil and it worked okay but still has a lot of pain. Then tried sulfasalazine but my liver count went through the roof so we stopped that. Methotrexate made me very sick so now I am on Leflunomide. That has helped a bit but still have burning pains and my face is still red. I am seeing a new rheumotolgist in May while still seeing the guy I have been seeing. I do have ulcerative colitis which is in remission. I also have dry eye and get mouth sores. I am so confused (going on 2 years trying to get diagnosed). Any one else have similar symptoms and were diagnosed? I feel so lost.

@lisabeans Perhaps you need to rule out a few things. I would start by ruling out mis-folded dead and dying Protein deposit disease, or commonly called Amyloidosis. You can find a list of many of the common Amyloidosis (short form: Amy) in Wikipedia.com. Search for Amyloidosis, then study that article, and articles on Amy from ALNYLAM.com and Mayo. Have your doc order a Bindings/Mayo SERUM FreeLiteChain(c) test from a good lab, such as Mayo, Quant Labs or ARUP Labs in Salt Lake City, along with a 24-hour total protein survey. If the sFLC figure is >1.6 mg/deciliter, or the 24-hr is > 0.5g/day, it is a sure sign you have trouble in that area. Sounds like Sjogren’s or SICCA, + Syncope + autoimmune familial insomnia + GI issues. All possible, and markers of AL Amy.

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Thanks. I will check that out. I am now seeing a 3rd rheumatologist. He feels it is an ai (possibly ra) and fibro.

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I wouldn’t rule out Sjogren’s Syndrome. Dry eyes and mouth sores are two things that are definitely symptoms although they can be symptoms of other things too.

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My blood test for Sjogrens came back negative

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About six months ago my doctor of maybe 30 years said inflammatory arthritis. My question here is what does that mean? Over so many years of testing I have learned it isn't so easy to get to the final answer. I know that's not what anyone wants to hear. When she told me Fibromalgia, Sjogrens, Raynaulds, and a few diagnoses that seemed to be an answer there was still something that wasn't answered. What I am trying to say is we have to look at the bright side. All this time they've been learning new things and new meds are being discovered. Today must be a good day for me and we better all enjoy the ones we can. Hang in there.

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@mschock

I just joined this site so am a little guarded about putting info out there. I’m stepping out of my comfort to interact. As for my Sx. I have many little issues from chronic nausea to joint pains. I’m dragging my feet making an appointment. I you were to see me I look like the picture of health

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I think, I can feel for you, because I was in the same situation. Looked like a picture of health. But donˋt let that fool you. After going thru this period of autoimmune desease symptoms, 7 years, you can tell now, that I am going thru this pain, IBS. Crohns and nausea, headaches, dizziness etc has taken its toll. On top, I became dependent on opioids for back and neck pain. Became isolated from friends and family, because I did not want them to see, what pain I had to endure. Now I have anxiety and depression, and you would not want to see me now. I think, the autoimmune problems are that your own body attacks you, via brain and digestive problems. Does anybody went thru this after years of golden health and happiness?

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@edda

I think, I can feel for you, because I was in the same situation. Looked like a picture of health. But donˋt let that fool you. After going thru this period of autoimmune desease symptoms, 7 years, you can tell now, that I am going thru this pain, IBS. Crohns and nausea, headaches, dizziness etc has taken its toll. On top, I became dependent on opioids for back and neck pain. Became isolated from friends and family, because I did not want them to see, what pain I had to endure. Now I have anxiety and depression, and you would not want to see me now. I think, the autoimmune problems are that your own body attacks you, via brain and digestive problems. Does anybody went thru this after years of golden health and happiness?

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Hi, @edda – I'm sorry to hear about the pain you've gone through. You mentioned experiencing anxiety and depression, and I wanted to suggest you might check out our Depression & Anxiety group https://connect.mayoclinic.org/group/depression-anxiety/.

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Have you done any testing for Sjogren’s Syndrome?

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@lisabeans

Thanks. I will check that out. I am now seeing a 3rd rheumatologist. He feels it is an ai (possibly ra) and fibro.

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I have fibromyalgia please check out this blood test. I took it and came back positive. But many people are misdiagnosed because doctors can’t figure something out so they will just throw that label on. The Fma test please google it. They are actually doing a vaccine trial with all the people who tested positive. But for peace of mind contact them. FYI most Rhumatologist don’t believe this test because most Rhuematologist don’t know how to deal with Fibro. I have major experiences with several doctors and years before being diagnosed.

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@irishcolleene

I have fibromyalgia please check out this blood test. I took it and came back positive. But many people are misdiagnosed because doctors can’t figure something out so they will just throw that label on. The Fma test please google it. They are actually doing a vaccine trial with all the people who tested positive. But for peace of mind contact them. FYI most Rhumatologist don’t believe this test because most Rhuematologist don’t know how to deal with Fibro. I have major experiences with several doctors and years before being diagnosed.

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All I can say is good luck because I’ve been going through this forever 25 years. I truly believe fibromyalgia as a catchall for other disorders that are comorbidities of connective tissue diseases. I am finally getting to the bottom of the real issues and most rheumatologist absolutely do not and will not take the time to figure out what’s truly going on. You must find somebody who will actually listen to you Instead of just dictating what they think instead of doing research. I’m having to train my own doctors in rare disorders and I’ve been right on every account.

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@techchick1025

All I can say is good luck because I’ve been going through this forever 25 years. I truly believe fibromyalgia as a catchall for other disorders that are comorbidities of connective tissue diseases. I am finally getting to the bottom of the real issues and most rheumatologist absolutely do not and will not take the time to figure out what’s truly going on. You must find somebody who will actually listen to you Instead of just dictating what they think instead of doing research. I’m having to train my own doctors in rare disorders and I’ve been right on every account.

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Dear Techchick oh my! You are so right. I have experienced the same as you, But here where I live the doctors will not and do not want to listen and understand. To me it is very important for the doctors to listen and learn about their patients to help me,you and the rest of us. I saw a new general practitioner today and she told me that I have three auto immune diseases. She is quite young and probably this is her first practice. Ahhhh! There is hope yet for us humans. A candle in the dark. Applause for this human beginner in her practice. And for the rest of us hang in there. But now the rest of the story: I brought with me all my recent blood workups and etc. which made it easier to put the story together.

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I just links to very important articles and got a response today that they can’t access the videos or articles from work. Really, they don’t know how to print an email and look at it from home. 4 doctors got this info and that’s their response.

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WHAT ARE THE 3 AUTO IMMUNE DISEASES. IF YOU PREFER NOT TO SAY I UNDERSTAND. THANK YOU TERESA

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I was diagnosed with Sjogren's syndrome it sounds very similar to a symptoms that I have right now. Ask your rheumatologist or your neurologist to have the test done on you it's very simple to have done. The Plaquenil is the drug that they have given me and it does only help a little bit. But have the test done. I'm surprised they haven't suggested that for you. Look it up and you'll see what I'm talking about.

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@pjc820

I was diagnosed with Sjogren's syndrome it sounds very similar to a symptoms that I have right now. Ask your rheumatologist or your neurologist to have the test done on you it's very simple to have done. The Plaquenil is the drug that they have given me and it does only help a little bit. But have the test done. I'm surprised they haven't suggested that for you. Look it up and you'll see what I'm talking about.

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Hello @pjc820, welcome to Connect. Thank you for sharing what helps you for your diagnosis with similar symptoms. I wasn't sure who your post was directed to? The person who started the discussion @lisabeans? If you tag a member with their member name (@membername), they will receive an email notification with a link to your post.

Have you found other treatments that help with Sjogren's syndrome?

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