1. < Autoimmune Diseases

Unnamed Autoimmune Disease

Posted by hinac @hinac, Feb 23, 2023

Hi All, I am new to this group.
ANA Centromere 1:2560
Centromere B >8
My rheumatologist said I definitely have autoimmune disease but he is unable to name it based on other tests.
I have been on hydroxychloroquine 200mg once a day for 9 months. ANA has actually worsened from 1:320 5 months ago to 1:2560 now.
My main problems are fatigue, difficulty in focusing and joint pain. I also have chronic hives for 7 years before I was diagnosed with Autoimmune Disease.
Appreciate your thoughts if you have similar experiences. Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 23, 2023

Welcome @hinac, the symptoms you describe, like fatigue, joint pain, and cognitive function, are shared by many autoimmune diseases. Autoimmune diseases can be challenging to diagnose.

You might find some helpful tips and experiences from members like @becsbuddy @carla314 @dxcrestsyndrome2020 @carpe_bean @katk and others in these 2 related discussions:
- What can cause ANA titre of 1:2560? https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/?commentsorder=newest#chv4-comment-stream-header
- Tips for Getting a Proper Diagnosis of an Autoimmune Disease https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

Has the hydroxychloroquine helped your symptoms at all? Have you considered getting a second opinion?

REPLY
2 replies
dxcrestsyndrome2020 | @dxcrestsyndrome2020 | Feb 23, 2023
In reply to @colleenyoung "Welcome @hinac, the symptoms you describe, like fatigue, joint pain, and cognitive function, are shared by..." + (show)
@colleenyoung

Welcome @hinac, the symptoms you describe, like fatigue, joint pain, and cognitive function, are shared by many autoimmune diseases. Autoimmune diseases can be challenging to diagnose.

You might find some helpful tips and experiences from members like @becsbuddy @carla314 @dxcrestsyndrome2020 @carpe_bean @katk and others in these 2 related discussions:
- What can cause ANA titre of 1:2560? https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/?commentsorder=newest#chv4-comment-stream-header
- Tips for Getting a Proper Diagnosis of an Autoimmune Disease https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

Has the hydroxychloroquine helped your symptoms at all? Have you considered getting a second opinion?

Jump to this post

I have had the same dx given by Dr.’s through 2 different Health Plans. Have seen rheumatologist, dermatologist, and others within each of the two plans who have all confirmed, along with my testing, Crest Syndrome.

I did decide not to try the hydroxychloroquine. I filled the first RX but called my rheumatologist and said I was not ready to take that step yet. Dr. Was okay with my decision.

REPLY
1 reply
dxcrestsyndrome2020 | @dxcrestsyndrome2020 | Feb 23, 2023
In reply to @dxcrestsyndrome2020 "I have had the same dx given by Dr.’s through 2 different Health Plans. Have seen..." + (show)
@dxcrestsyndrome2020

I have had the same dx given by Dr.’s through 2 different Health Plans. Have seen rheumatologist, dermatologist, and others within each of the two plans who have all confirmed, along with my testing, Crest Syndrome.

I did decide not to try the hydroxychloroquine. I filled the first RX but called my rheumatologist and said I was not ready to take that step yet. Dr. Was okay with my decision.

Jump to this post

I forgot to thank you for all the info. Regardless of the 2 different sets of Dr’s from 2 different Health Plans, I am VERY open to the possibility this still may be something different. I really appreciate the links which I definitely will be looking at and keep all possibilities open. I have not been overly thrilled with the providers in either group so far. I think they all seem stretched too thin and anxious to assign a name to what I may have without thoroughly reviewing my symptoms, lab work etc. (both HMO’s). Although I always had PPOs when I was working now that I am no longer working an HMO is all I can afford..

REPLY
cpd54 | @cpd54 | Feb 24, 2023

Something I found very helpful while waiting on a definitive diagnosis was the autoimmune protocol diet. My symptoms have lessened immensely. I don’t know if eating this way would skew your blood test, but I was desperate for something to help with the pain…btw, I still don’t have a diagnosis🤦…like you, my ANA titers show autoimmune….

REPLY
hinac | @hinac | Feb 24, 2023
In reply to @colleenyoung "Welcome @hinac, the symptoms you describe, like fatigue, joint pain, and cognitive function, are shared by..." + (show)
@colleenyoung

Welcome @hinac, the symptoms you describe, like fatigue, joint pain, and cognitive function, are shared by many autoimmune diseases. Autoimmune diseases can be challenging to diagnose.

You might find some helpful tips and experiences from members like @becsbuddy @carla314 @dxcrestsyndrome2020 @carpe_bean @katk and others in these 2 related discussions:
- What can cause ANA titre of 1:2560? https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/?commentsorder=newest#chv4-comment-stream-header
- Tips for Getting a Proper Diagnosis of an Autoimmune Disease https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

Has the hydroxychloroquine helped your symptoms at all? Have you considered getting a second opinion?

Jump to this post

Thank you for the info and links to previous discussions which are very helpful.

The hydroxychloroquine doesn't seem to be doing anything.

I am thinking of getting a second opinion.

REPLY
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