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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: Mar 3 2:17pm | Replies (30)
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@jillalayne66

I am so glad I found this group. I had been misdiagnosed for years starting when I was a teenager. JRA, but RA negative, then Adult JRA which doctors later scoffed at. I finally found a doctor who checked for HBLA 27 and gave the diagnosis of UCTD. I had a successful treatment twice of hydroxychloroquin and methotrexate and went into remission for quite some time, both times. Recently it has returned, (could it be stress induced?) and the fatigue is horrible. I feel like I have a bad flu bug but I know that's not it. I am only 57 and working full time and it is so hard to explain to my employer why I feel so awful as this is not a common autoimmune disease. I am not sure if my tinitus is related, and lately I have been having significant problems with name recall, and memory issues. I am in yet another new town and trying to find help has been trying.

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Replies to "I am so glad I found this group. I had been misdiagnosed for years starting when..."
Becky, Volunteer Mentor | @becsbuddy | Mar 2 8:08pm

@jillalayne66 Boy, does everyone here know about fatigue! You may want to check out the following discussion which talks about fatigue and how it can be managed:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Like I didn’t pay any attention to my “spoons” today and boy, did I know it later!
You’re in a new town and need to find a doctor, correct? Try contacting the Genetic and Rare Diseases organization (GARD) and they should be able to help:
https://rarediseases.info.nih.gov/
Can you call GARD on Monday. Let me know what you learn, please.

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ebero | @ebero | Mar 3 2:17pm

I had to retire from a job I enjoyed because of the fatigue, but I wasn't referred to a neurologist until I had two bad falls. I have terrible tinnitus, but again, no one else can see it or hear it, so it must be all in my head, right? (double entendre intended, haha)
I'm starting hydroxychloroquin today! Rheumatologist said it could take 3-6 months to see any improvement. Is that your experience?
Hang in there, the stress of being in a new place can't be helping.
ebero

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