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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

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knoxville25 | @knoxville25 | Aug 28 12:02pm
In reply to @dstone501957 "My left vocal cord was found to be paralyzed from imaging in 10 day prior to..." + (show)
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My left vocal cord was found to be paralyzed from imaging in 10 day prior to surgery. After seeing an ENT, the Orthopedic Surgeon was cleared to go anterior (through front). Literally 15 min prior to being wheeled into OR, the Surgeon decided to go posterior. He did not want to risk damaging my right vocal cords. Knowing what I know, I would probably not gone through with it. Posterior Cervical Surgery is one of the top 5 most painful surgeries to recover from.

I know SBF is ruled out and the Neurologist kept saying she saw signs of early stage Parkinson. She has never bothered to contact me to discuss the Skin Biopsy results. I called up and asked for a the report to be placed in the portal. This was actually the 2nd attempt with skin biopsy. The first skin sample was rejected due to being sent to lab in an expired fixative (preserving solutioon). Sounds like we had similar Surgery. I will get back.later. I have a lot of horror stories from my 2 plus year ordeal.

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I’m new here but what jumped out at me is the failure of doctors in getting back with patients? Until Medicare Advantage and EMR, this was never a problem. I developed dysarthria and problems using my right hand for buttoning buttons, writing, etc. Weakness has been progressive to the point where I cannot use my rt arm. My PCP ordered a brain MRI in 12/24. It was in my portal within 24 hours of the date performed 01/11/25. My PCP never returned my calls & cancelled my follow up appointment. Went to scheduled neuro appointment as she did schedule that, but failed to send preauth so he rescheduled for 2/25. November one has explained my brain mri, which was abnormal. To this date, I have no explanations and no diagnosis. The ER doctor and my new PCP believe it’s an autoimmune disease and that I need help from a more advanced facility. Any similar problems. I now require a walker to ambulate. My condition worsened after having COVID in January 2025.

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esgsf | @esgsf | Aug 29 10:00am
In reply to @fairn "I just got the results from a test that I think is a newer one, it's..." + (show)
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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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I had the same experience with the early Sjogren’s test showing positive, but other tests were negative. My Rheumatologist began treatment with Plaquenil. It helped a lot and relieved many symptoms. They have since added immunoglobulin Infusions monthly and I continue to improve.
I already had a lot of damage throughout my body, but the other standard tests were inconclusive. One of my organs was starting to fail and it has stabilized.
I hope they can find a treatment that will help you and slow or stop any further damage. Best of luck to you.

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suetex | @suetex | Aug 30 11:49am
In reply to @esgsf "I had the same experience with the early Sjogren’s test showing positive, but other tests were..." + (show)
Profile picture for esgsf @esgsf

I had the same experience with the early Sjogren’s test showing positive, but other tests were negative. My Rheumatologist began treatment with Plaquenil. It helped a lot and relieved many symptoms. They have since added immunoglobulin Infusions monthly and I continue to improve.
I already had a lot of damage throughout my body, but the other standard tests were inconclusive. One of my organs was starting to fail and it has stabilized.
I hope they can find a treatment that will help you and slow or stop any further damage. Best of luck to you.

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As a fellow Sjogren's traveler I too have been put on IvIg and watch the news for new drugs. Have you tried Retuximab? It didn't effect me (good or bad) but it looks like it should. Just wondering if you have had any experience with it.

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can9 | @can9 | Sep 18 5:43pm

Engineering son has autoimmune encephalitis for 27 months now, tried rituxmab, ivig , plasma exchanged, now is on his 5th dose of Cytoxan infusion, anyone who experiencing this, I am a newcomer and trying to understand this horrid disease

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