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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.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Sep 28, 2023
In reply to @crissihairston "I am waiting for appointment I have been approved for Ortho and Neurology. Just waiting for..." + (show)
@crissihairston

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.

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@crissihairston Yes, I hate it,too, when they repeat lab tests and all. But, as I’ve learned, all hospitals have different sets of ‘normal” values, so it works better for the doctor. Have you seen the discussion on visiting Mayo? https://connect.mayoclinic.org/discussion/share-your-mayo-clinic-tips-in-the-visiting-mc-discussions/
There should be some good tips for you!

REPLY
crissihairston | @crissihairston | Sep 28, 2023

Thank you for the link! I have my first appointment Nov20 ! I need to start booking the trip . Isn’t there a site to give discount for Mayo? Looks like I will be spending Thanksgiving with hubby at Mayo. And our 7 Year anniversary

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 28, 2023
In reply to @crissihairston "Thank you for the link! I have my first appointment Nov20 ! I need to start..." + (show)
@crissihairston

Thank you for the link! I have my first appointment Nov20 ! I need to start booking the trip . Isn’t there a site to give discount for Mayo? Looks like I will be spending Thanksgiving with hubby at Mayo. And our 7 Year anniversary

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@crissihairston, to get free concierge help with finding accommodation, travel plans, shuttles, things to do and more, contact Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
Regarding discounts, many of the hotels and other services offer Mayo patient discounts.

I recommend that as you prepare for your trip you join the discussions in the Visiting Mayo Clinic support group here https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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