Undiagnosed Autoimmune Disease

Posted by dstone501957 @dstone501957, Aug 5 4:35pm

I have been dealing with what a neurotologist deemed to be Small Fiber Neuropathy with an underlying autoimmune disease for over 2 years. I experience a dull burning pain in just my right ear and severe chills. They may seem unrelated, but the frequency, duration an intensity have progressed together.

Has anyone ever participated in the Undiagnosed Disease Network that the Mayo Clinic has? BJC/Wash-U in St Louis, MO is part of the Mayo's network. I have been seen by numerous specialist, none have offered up any suggestions. I am in the process of trying to get approved by the BJC/Wash-U Undiagnosed Disease Network.y

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for dstone501957 @dstone501957

The problem I am having is PPP and a few specialist did blood panels for about 8 to 10 of the most common to detect and treat including Celeac, then they all gave up. I have tried a few times on this site to get lucky and come across an answer to my situation. That is also why I am pursuing the Undiagnosed Disease Network through BJC/Wash-U that is part of the Mayo Clinic. Than you for your thoughtful response. Hope you are doing well these days.

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So the tests were negative for Sjogren's also? Often unless there is a very experienced rheumatologist, they don't think of Sjogren's. And unfortunately, it can attack many of our systems. (Which is unfortunately your antibodies attacking yourself- not a foreign invader.)

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Profile picture for suetex @suetex

So the tests were negative for Sjogren's also? Often unless there is a very experienced rheumatologist, they don't think of Sjogren's. And unfortunately, it can attack many of our systems. (Which is unfortunately your antibodies attacking yourself- not a foreign invader.)

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Yes, both well within normal value. The below were results from Jan 2024, both well below < 0.9 value.

Anti ENA SS-A was 0.3 and Anti ENA SS-B was 0.2

Thanks for asking.

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Profile picture for dstone501957 @dstone501957

If you check AI (I use Microsoft Copilot) for mast cell activation syndrome you can get some really good responses. I created just a 2-sentence search on my conditions and AI generated a 4-page long discussion that covered most all of the diagnoses, treatments, drugs and follow-up. The best thing it is not a doctor looking at his watch constantly while you are talking.

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@dstone501957, AI assistants, like CoPilot can be helpful when searching for information about your health. When you ask an AI assistant a question or give it a prompt, it looks at the data and then gives back answers or suggestions in plain language. But the information AI assistants give you isn’t always 100% accurate—it depends on the data it was trained on and how your question or prompt was worded. It's important to fact check.

You may appreciate the guidance and information posted in this blog:
- What is Generative AI? What does this mean on Mayo Clinic Connect? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/

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Couldn't agree more about AI, "trust, but verify." The info that I suggested the individual check out was for the most part foot noted and referenced back to source documents including the Cleveland Clinic, Mayo Clinic and Web MD. I had never heard of Mast Cell Activation. When I see something mentioned in this group that I am not familiar with, I always do a deeper dive into it. I am still in search of the Unspecified Autoimmune Disease I have.

An interesting AI experience that I just encountered was an AI call from the Medicare Advantage Health Insurance I am enrolled in. I don't recalled the actual name AI used, I will just make it up here. The call went something like this: Hi I am AI "Sally" I am calling to update some medical information for your Primary Care Provider Dr "so and so" (actually used name of my prior PCP). Do you have time to answer some questions. I said no and hung up.

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I've always been kind of a "do it myself" kind of girl so I find the whole concept of A.I. distasteful.

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Profile picture for dstone501957 @dstone501957

Yes, both well within normal value. The below were results from Jan 2024, both well below < 0.9 value.

Anti ENA SS-A was 0.3 and Anti ENA SS-B was 0.2

Thanks for asking.

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I just got the results from a test that I think is a newer one, it's called Early Sjogren's Syndrome Profile. I have not tested positive for Sjogren's for 6 years, although I have some of the symptoms and a positive ANA. This test had 9 components that tested specific things related to the salivary and parotid proteins and other antibodies. I tested positive for 'SALIVARY PROTEIN 1 (SP 1) IGM ANTIBODIES'. Apparently it was developed because the older tests would only register positive after some fairly extensive damage has been done and the antibodies are high enough to detect. The hope is that they can find this sooner and prevent damage to the salivary and parotid. I have had and am currently having some serious ear problems, I had to have an eardrum replacement several years ago and am once again having severe retraction of the eardrum and inflammation of the mastoid. Sjogren's can damage the salivary glands and cause inflammation of the eustachian tube which will create middle and inner ear complications. Thank goodness that they continue to find new and more sensitive tests, after 6 years I am finally getting some diagnoses due to a couple of new tests; the second test is the CCP. I never test positive on the RF or CRP tests, but did on the CCP. Keep asking questions!

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Profile picture for fairn @fairn

I just got the results from a test that I think is a newer one, it's called Early Sjogren's Syndrome Profile. I have not tested positive for Sjogren's for 6 years, although I have some of the symptoms and a positive ANA. This test had 9 components that tested specific things related to the salivary and parotid proteins and other antibodies. I tested positive for 'SALIVARY PROTEIN 1 (SP 1) IGM ANTIBODIES'. Apparently it was developed because the older tests would only register positive after some fairly extensive damage has been done and the antibodies are high enough to detect. The hope is that they can find this sooner and prevent damage to the salivary and parotid. I have had and am currently having some serious ear problems, I had to have an eardrum replacement several years ago and am once again having severe retraction of the eardrum and inflammation of the mastoid. Sjogren's can damage the salivary glands and cause inflammation of the eustachian tube which will create middle and inner ear complications. Thank goodness that they continue to find new and more sensitive tests, after 6 years I am finally getting some diagnoses due to a couple of new tests; the second test is the CCP. I never test positive on the RF or CRP tests, but did on the CCP. Keep asking questions!

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As one Sjogren's experiencer to another, I'm glad you found some answers.

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Profile picture for dstone501957 @dstone501957

Couldn't agree more about AI, "trust, but verify." The info that I suggested the individual check out was for the most part foot noted and referenced back to source documents including the Cleveland Clinic, Mayo Clinic and Web MD. I had never heard of Mast Cell Activation. When I see something mentioned in this group that I am not familiar with, I always do a deeper dive into it. I am still in search of the Unspecified Autoimmune Disease I have.

An interesting AI experience that I just encountered was an AI call from the Medicare Advantage Health Insurance I am enrolled in. I don't recalled the actual name AI used, I will just make it up here. The call went something like this: Hi I am AI "Sally" I am calling to update some medical information for your Primary Care Provider Dr "so and so" (actually used name of my prior PCP). Do you have time to answer some questions. I said no and hung up.

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@dstone501957 smart move! With so many scammers out there these days, you just can’t be too careful!

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I’m so sorry you are dealing with this. I am in mid-Missouri and just started having nerve pain throughout my arms, back, and legs. I was hoping to find answers and relief in this group, but it seems this kind of thing is a mystery. I’m not opposed to going to STL if I could get relief and answers. Good luck to you!

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