Looking for help and support- OJ (isoleucyl-TRna synthetase) AB

Posted by ottomalynn @ottomalynn, Sep 27, 2023

Good morning,
I have been very sick for 12 months now and I had the myositis blood panel completed and have a high OJ (isoleucyl-tRNA synthetase) antibody. My symptoms are muscle pain, low-grade fever, flu-like symptoms, Raynaud's syndrome, fatigue, brain fog, etc.
I get really sick if I overdo any activity, get stressed, get overheated, or do physical activity. Such as cleaning the house, over-exerting myself by taking a walk, and enjoying a day at the beach. It kicks in about 24- 36 hours after exertion and I am in chronic pain for several days and can barely get off the couch or even sit up. My doctors (neurologist and rheumatologist) have no idea what to do since my other blood work does not show positives for anything else except low white blood counts and my muscle biopsies came back normal.
Does anyone have these same symptoms and the OJ antibody?

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

scolio | @scolio | Sep 27, 2023

I'm at as much of a loss for answers as you are. I've heard of autoimmune conditions sometimes showing up after viral infections or mold exposure. What have you learned so far about the isoleucyl-tRNA synthetase antibody?

ottomalynn | @ottomalynn | Sep 27, 2023

In reply to @scolio "I'm at as much of a loss for answers as you are. I've heard of autoimmune..." + (show)

The OJ antibody relates to ASS - antisynthetase syndrome. A very rare disease. My doctors have not even brought it up to me which is quite amazing. This syndrome does not talk about exertion issues, but it does mention all my symptoms except for the ILD (lung issues).

crissihairston | @crissihairston | Sep 27, 2023

I have everything you are having with the exception of the OJ.Going on 2 years being sent to every specialist.Last week was hospitalized for what at the time was Bells Palsy/ TIA. Which was neither. Went unconscious during the night bp dropped out and o2 .Blammed it on dyhydration.Echo and bubble study showed mild thinking in heart valve.I have felt worse since being released from hospital. Have dizzy spells with severe bone pain and muscle cramps.Have a hard time catching my breath with everything I do.I hope my visit to Rochester can give me some answers.

scolio | @scolio | Sep 27, 2023

In reply to @ottomalynn "The OJ antibody relates to ASS - antisynthetase syndrome. A very rare disease. My doctors have..." + (show)

Are you saying you have the ILD? I saw that mentioned here, and thought, no, that doesn't apply.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7881640/
very dense reading. I haven't read it, only skimmed the summary.

Becky, Volunteer Mentor | @becsbuddy | Sep 27, 2023

In reply to @ottomalynn "The OJ antibody relates to ASS - antisynthetase syndrome. A very rare disease. My doctors have..." + (show)

@ottomalynn Welcome to Mayo Clinic Connect! You’ve definitively come to the right place. I don’t know much about the syndrome you mentioned, but will try to find some members that do. Are you seeing doctors at a comprehensive medical center or university hospital? Local doctors are great but they sure don’t know all the strange diseases. Doctors at the medical centers/university hospitals are a step above, plus they have access to research.
Are your current doctors doing any further tests or starting treatment?
Will you check on one tomorrow and let me know what you learn?

Becky, Volunteer Mentor | @becsbuddy | Sep 27, 2023

In reply to @crissihairston "I have everything you are having with the exception of the OJ.Going on 2 years being..." + (show)

Welcome to Mayo Clinic Connect @crissihairston ! What you are experiencing doesn’t sound great and I’ll bet it doesn’t feel great either. When are you going to Rochester? I hope you’ll return to Connect and let everyone know what you learn.

crissihairston | @crissihairston | Sep 28, 2023

I am waiting for appointment I have been approved for Ortho and Neurology. Just waiting for general appointment for more diagnosis.Hopefully soon I have met all my out of pocket for the year. I am going for stress test this morning. Possible a spinal tap next week. I just hope they won’t want to repeat all the same test In Rochester.I will keep the group posted.

ottomalynn | @ottomalynn | Sep 28, 2023

In reply to @scolio "Are you saying you have the ILD? I saw that mentioned here, and thought, no, that..." + (show)

I do not have the lung issues that come with this disease. Thank goodness!

ottomalynn | @ottomalynn | Sep 28, 2023

In reply to @crissihairston "I am waiting for appointment I have been approved for Ortho and Neurology. Just waiting for..." + (show)

I wish you the very best in dealing with your illness. I am going to UT Southwestern on the 10th. Like you, I hope I will not have to have all these tests run again, but I am so ready to feel better and have a more normal life soon that I will do anything. Stay strong and keep me updated.

ottomalynn | @ottomalynn | Sep 28, 2023

In reply to @becsbuddy "@ottomalynn Welcome to Mayo Clinic Connect! You’ve definitively come to the right place. I don’t know..." + (show)

Thank you! I have been seeing specialists, but not from the best system.
I have been referred to UT Southwestern and have an appointment on the 10th of October. I am looking forward to a new set of eyes and doctors for help.
With all autoimmune diseases, there are other diseases that want to creep in and pile on top of what you have, which is also happening to me. Trying to stay active when possible and managing symptoms as best I can.
I would love to speak to others who may have this syndrome.
I find it helps to have as much support as possible!

View More View Less

Please sign in or register to post a reply.