1. < Autoimmune Diseases

Undetermined Auto Immune

Posted by dstone501957 @dstone501957, Jun 25 8:59am

I have had an undetermined autoimmune disease for over 15 months. My Neurologist did not want to address the underlying cause of Small Fiber Neuropathy. Neuromuscular blood work for FGFR3 antibody was 7,500. ANA was 1:320, but recent test was negative. I have gone from good days and bad days to almost all bad days. Primary symptom is constant chills. When my Primary Care Physician (PCP) attempted to identify with blood work, an M protein spike showed up. Seeing Oncologist every 6 months for MGUS, ranges between .5 and .7. At this level Oncologist does not believe it is causing the neuropathy. Seems like I am on my own. Specialist at top hospital, Barnes Jewish Christian (BJC)/Washington University in St Louis couldn't care less. May or may not be related, but I have had a dull burning ear pain in right ear since all of this started in March of 2023. Looking for recommendation on medication to help with the autoimmune that I can discuss with my PCP.

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sbtheplumber1 | @sbtheplumber1 | Jun 26 8:19am

Is there burning on the inside or outside of ear. I kept noticing my ear red and burning sometimes itchy . Sometimes it might be both ears or opposite ears. I asked 5 different doctors and no one knew after googling it was rare Burning ear syndrome, finally my Rheumatologist new and said if it’s the whole ear it Sjogren’s . If this is your case I hope this helps or helps someone else

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2 replies
dstone501957 | @dstone501957 | Jun 26 9:02am

I also take alpha Lipoic acid and Acetyl l carnitine plus Vegan N-Acetyl L-Cysteine supplements for small fiber neuropathy (SFN). I came across these through artificial intelligence (AI). I just been taking them for about 3 weeks. Not sure if any benefit yet. Have you seen a noticeable benefit?

I have had most all imaging (MRI, CT and PET SCAN) and blood work to rule out the obvious. The neuro muscular blood work is what show the FGFR3 at 7,500 (should be less 3,000). The Neurologist tested for it, found it, but did nothing further. My PCP believes this needs to be investigated,

I hear from others about how gabapentin makes them real sleepy. I am actually up to 600 mg three times a day plus 50 mg of Nortriptyline late in the evening, neither one of these make me sleepy. At one point in time, a Neurologist upped it to 800 mg three times daily. My PCP had me try Carbamazepine for the dull burning ear pain, symptoms could be trigeminal or geniculate neuralgia. ENT said Trigeminal neuralgia would present more facial symptoms

I came across this NIH study "Small Fiber Neuropathy Triggered by COVID-19 Vaccination: Association with FGFR3 Autoantibodies and Improvement during Intravenous Immunoglobulin Treatment."

I have been at this for 15 months, I may have had Covid in March of 2023, but it was 10 days before I was seen, and it was too late to test. I can tolerate the SFN, but I believe the unknown underlying condition and the dull burning ear is what needs to be identified and resolved. I am 67, with no major health issues until March 2023.

My thoughts on some of these specialists is they show their ignorance with arrogance.

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dstone501957 | @dstone501957 | Jun 26 9:08am
In reply to @sbtheplumber1 "Is there burning on the inside or outside of ear. I kept noticing my ear red..." + (show)
@sbtheplumber1

Is there burning on the inside or outside of ear. I kept noticing my ear red and burning sometimes itchy . Sometimes it might be both ears or opposite ears. I asked 5 different doctors and no one knew after googling it was rare Burning ear syndrome, finally my Rheumatologist new and said if it’s the whole ear it Sjogren’s . If this is your case I hope this helps or helps someone else

Jump to this post

No, it is inner ear, seems to have a positional aspect too. Gets worse when sitting for long periods I was tested for Sjogren's, it was negative,

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1 reply
slkanowitz | @slkanowitz | Jun 28 3:51am

The Avise CTD blood tests help differentiate the various common autoimmune diseases and is very sensitive compared to the standard tests. It measures more than what rheumatologists usually order individually. I would ask your doctor for that test. Avise CTD (connective tissue disease)

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artemis1886 | @artemis1886 | Jun 29 6:29am
In reply to @dstone501957 "No, it is inner ear, seems to have a positional aspect too. Gets worse when sitting..." + (show)
@dstone501957

No, it is inner ear, seems to have a positional aspect too. Gets worse when sitting for long periods I was tested for Sjogren's, it was negative,

Jump to this post

I was tested for seronegative Sjogrens and tested positive. Dr Anne Oaklander suggested that I be tested for it. There is a doctor in Washington that specializes in it. I went to the eye doctor and they tested me and it showed severe dried eyes. You don’t test by blood work for seronegative Sjogrens. I can tell you the testing for it if interested.

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1 reply
slkanowitz | @slkanowitz | Jun 29 12:22pm
In reply to @sbtheplumber1 "Is there burning on the inside or outside of ear. I kept noticing my ear red..." + (show)
@sbtheplumber1

Is there burning on the inside or outside of ear. I kept noticing my ear red and burning sometimes itchy . Sometimes it might be both ears or opposite ears. I asked 5 different doctors and no one knew after googling it was rare Burning ear syndrome, finally my Rheumatologist new and said if it’s the whole ear it Sjogren’s . If this is your case I hope this helps or helps someone else

Jump to this post

Red and burning, itchy external ears can be a sign of Relapsing Polychondritis, a rare autoimmune disease that causes inflammation of the cartilage in external ears, bridge of nose, rib and joint cartilage. It causes over a long time collapse of the bridge of nose causing it to flatten. Look for pictures online of ears and “saddle noses” characteristic of RP and see if it fits. A rheumatologist is the Dr to discuss this with and get treatment when it flares up.

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1 reply
sbtheplumber1 | @sbtheplumber1 | Jun 29 3:07pm
In reply to @slkanowitz "Red and burning, itchy external ears can be a sign of Relapsing Polychondritis, a rare autoimmune..." + (show)
@slkanowitz

Red and burning, itchy external ears can be a sign of Relapsing Polychondritis, a rare autoimmune disease that causes inflammation of the cartilage in external ears, bridge of nose, rib and joint cartilage. It causes over a long time collapse of the bridge of nose causing it to flatten. Look for pictures online of ears and “saddle noses” characteristic of RP and see if it fits. A rheumatologist is the Dr to discuss this with and get treatment when it flares up.

Jump to this post

@slkanowitz Thank you for the information I was told by the Rheumatologist it’s Burning Ear Syndrome and there’s no treatment for it. I might need to notify Mayo Spine surgeon of this since I’m awaiting a decision from them to see if they can help me with a failed Lumbar Back Surgery and possible needing neck surgery.

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sbtheplumber1 | @sbtheplumber1 | Jun 30 1:05pm
In reply to @artemis1886 "I was tested for seronegative Sjogrens and tested positive. Dr Anne Oaklander suggested that I be..." + (show)
@artemis1886

I was tested for seronegative Sjogrens and tested positive. Dr Anne Oaklander suggested that I be tested for it. There is a doctor in Washington that specializes in it. I went to the eye doctor and they tested me and it showed severe dried eyes. You don’t test by blood work for seronegative Sjogrens. I can tell you the testing for it if interested.

Jump to this post

@artemis1886 If you wouldn’t mind sharing how do they test for Seronegative Sjogrens?

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artemis1886 | @artemis1886 | Jun 30 5:23pm

Salvia gland biopsy
Lip biopsy
Tilt table test
Brain MRI. showed scattered nonspecific periventricular and subcortical cerebral white matter T2/fluid-attenuated inversion recovery hyperintense foci. Twenty-nine patients (64.4%) presented to the neurology clinic prior to pSS diagnosis, and the median delay in diagnosis from the first neurology clinic visit was 5 (interquartile ranges 2.0–20.5) months. Migraine and depression
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10289021/#:~:text=The%20diagnosis%20was%20based%20on,criteria%2C%20and%20seronegative%20antibody%20status.

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