1. < Autoimmune Diseases

Seronegative Sojourns

Posted by artemis1886 @artemis1886, Apr 6 6:18pm

Does anyone have seronegative Sojourns?
If so what did you have to go through to get it diagnosed? I live in Dallas Texas and they want me to go to Baltimore for testing.

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pb50 | @pb50 | Apr 8 4:43pm
In reply to @artemis1886 "I see a neuromuscular neurologist on Wednesday. I saw a rheumatologist on Thursday last week. I..." + (show)
@artemis1886

I see a neuromuscular neurologist on Wednesday.
I saw a rheumatologist on Thursday last week. I am so discouraged. My Ana, crp, compliant 3 and sed rate all elevated. I test negative for everything but 13 for Rheumatoid Arthritis and I am told you have to test 14. Really one lousy point. Now talking seronegative sojourns because they normally go together.
I have the worst luck with doctors.

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I’m not suggesting you follow my instinct. But I would say “ look I have something. I’m suffering. I ping on 13 of 14 criteria required for a diagnosis of sero-negative RA. Is there room to use it as a working diagnosis to start some
form of treatment?

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1 reply
artemis1886 | @artemis1886 | Apr 8 5:12pm

The doctor issue is very frustrating!
I should not have had to go to Boston to find out the tremors are the movement disorder that’s listed under neuropathy. But it goes back to what I learned in Boston neurologist now specialize. I will be seeing a neuromuscular neurologist on Wednesday. Now if I can get the rheumatologist to test for seronegative Sojourns we might be on our way.

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artemis1886 | @artemis1886 | Apr 8 6:54pm
In reply to @pb50 "I’m not suggesting you follow my instinct. But I would say “ look I have something...." + (show)
@pb50

I’m not suggesting you follow my instinct. But I would say “ look I have something. I’m suffering. I ping on 13 of 14 criteria required for a diagnosis of sero-negative RA. Is there room to use it as a working diagnosis to start some
form of treatment?

Jump to this post

He gave me a print out of four different medications. I kinda blew up. Plus Dr. Oaklander’s letter stated my doctors had been negligent in their care of me. That I should not be in the shape that I am. She stated in her letter that I supplied here with four years of my Ana, CRP and sed rate being elevated that should be a good indication that I have some kind of autoimmune disorder plus my family history of Rheumatoid Arthritis. He kinda got on the ball last time he did nothing.

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pb50 | @pb50 | Apr 8 8:18pm

Awesome.
FYI I believe the new aggressive auto correct is changing Sjogren’s to Sojourns. I had to turn it off because I couldn’t get anything typed that I intended.

Sounds like you have some progress!!

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artemis1886 | @artemis1886 | Apr 8 10:41pm

Actually it is me misspelling it. You are the first person to correct me. Thank You! I did not know how to spell it and autocorrect keeps changing it.

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1 reply
pb50 | @pb50 | Apr 9 8:10am
In reply to @artemis1886 "Actually it is me misspelling it. You are the first person to correct me. Thank You!..." + (show)
@artemis1886

Actually it is me misspelling it. You are the first person to correct me. Thank You! I did not know how to spell it and autocorrect keeps changing it.

Jump to this post

Well good. I have had so many issues with the updated auto correct I had to turn it off - so I assumed that was the reason.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 9 7:21pm

@artemis1886 I’m choosing to answer your question here so that everyone has access to the question and answer. You mentioned that all the Care Network hospitals are at a distance. So are the Mayo Clinic’s. You may have to travel for good care. You also referred to U of Texas in Austin as having a long waitlist. That seems to be the story for all good doctors and hospitals these days. But UT is an excellent school with a great medical school. And there is MD Anderson!
What is the #1 thing preventing you from calling one of these hospitals?

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1 reply
artemis1886 | @artemis1886 | Apr 9 7:36pm
In reply to @becsbuddy "@artemis1886 I’m choosing to answer your question here so that everyone has access to the question..." + (show)
@becsbuddy

@artemis1886 I’m choosing to answer your question here so that everyone has access to the question and answer. You mentioned that all the Care Network hospitals are at a distance. So are the Mayo Clinic’s. You may have to travel for good care. You also referred to U of Texas in Austin as having a long waitlist. That seems to be the story for all good doctors and hospitals these days. But UT is an excellent school with a great medical school. And there is MD Anderson!
What is the #1 thing preventing you from calling one of these hospitals?

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I was referred to UT Southwestern in Dallas.
I just got my labs back they are crazier than before. FASTING
High
Creatine
Glucose 109 A1C 5.4
HCT
Hemoglobin
Low in the red
Alt
AST
Bun
Egfr
Looking at liver and kidney failure. I don’t drink or smoke. Never I have asthma and allergic to sulfites alcohol has sulfites.
MD Anderson is a cancer hospital. I haven’t been referred to Austin.
We are now looking for a liver and kidney doctor.

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