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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deborahyost3 | @deborahyost3 | 3 days ago

Dude that's a bummer. Sorry that's happening to you. It took me over 3 and 1/2 years to get my primary Sjogren's diagnosis and even then I did not get it from my rheumatologist, who to be honest was very proactive and was pretty sure I had ***something*"* And thus had proactively started me on hydroxychloroquine which is a first-line disease modifier for many autoimmune diseases.
Couple years later my retinal specialist was treating me for my wet AMD and saw changes in my retina and eyes that are only congruent with primary Sjogren's disease.
He proactively got on the phone with my rheumatologist and the next time I went in she officially gave me the primary Sjogren's diagnosis. Voila! Diagnosis!

My pain doctor prescribed LDN 3 years ago and that's helped a great deal as well.
I recommend LDNresearchtrust.org
for doing some reading of scientific studies and anecdotal patient and doctor and pharmacists experiences.

LDN is an off-label use of a drug for another purpose, naltrexone, an opioid receptor inhibitor used in treatment of addiction at much larger doses 50 to 100 mg whereas low dose naltrexone-LDN- is used as a novel anti-inflammatory , immune system modulator and overall pain relief without any addictive potential or any serious side effects.

My lupus and RA factors are usually borderline but I don't have the diagnosis cuz the blood work doesn't veer into the definitely positive territory. But I'm all right with that too because the treatment for primary sjogrens is basically identical to the treatment for RA and lupus.

I WISH YOU THE VERY BEST OF LUCK.
❤️

lkirnbauer | @lkirnbauer | 2 days ago

I have not read all the comments regarding your health, but what triggered me was the constant “chills”. Is it possible that you suffer from Hyperthyroidism? I ask, because your body is always cold with hyperthyroidism. It’s a simple blood test that will test your Thyroid Levels, T3-Free, T4-Free, Thyroid Antibodies. I suffer from Hypo-thyroidism, which is the opposite of Hyperthyroidism and take Synthroid to control it. Wishing you all the best on your health journey.