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Lab questions and follow up care
Here’s the whole situation for context I am a 28 year old female, that has a medical diagnosis of EOE, anemia, now b12 deficiency, gerd, and other chronic conditions. I’ve learned to live with these conditions, I’ve been worried for years about this, I have had chronic joint pain, mainly in my knees, and I have the worst pain when I wake up in the morning, along with fatigue even after 8-9 hours of sleep, I was having brain fog for a very long time but it has since resolved. But I asked my hematology np why my hemoglobin kept dropping, i had told her recently that my GI was going to try and rule out Crohn’s. But she ordered a few rheumatic/inflammatory markers, C-Reactive protein normal, ESR- normal, here’s the kicker, my ANA titer is extremely high 1:1280 I was floored. I googled the result, and even Mayo Clinic said it was clinically significant, it also said my Ana pattern was speckled and showed anti ssa-ro antibodies. I am praying it is not lupus. I do not want that diagnosis. I know that my hematologist office will be calling me tomorrow and referring me to rheumatology. But my question is, how do I approach this, do I continue to do research, do I wait until I see the rheumatologist, what conditions are associated with this, should I be concerned, what medicines do you take for these auto immune conditions, how long does it take for an official diagnosis.
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My suggestion is to stop googling and guessing and wait for the appointment. You have researched your results and that is helpful, but anything further is going to cause you unnecessary anxiety.
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2 Reactions@tkablak I'm sorry you are going through this, and I know how scary it can be to get lab findings on line and try to figure them out.
BUT...like @kjoed53, I am going to ask you to do something very difficult for now. STOP searching the internet for answers, that means no Google, ChatGPT, Meta, AI... WAIT for the consult with your doctor.
Why? Only they will have your complete history and test results in hand (all something searches do not have) and can make an informed decision on what your possible diagnosis might be and what the next steps will be. ANA results are especially hard to evaluate - my rheumatologist spent over 20 minutes going over just those numbers with us, explaining that they are just a tool that gives him ideas of what he should do next.
For today, can you focus on something that gives you pleasure or peace, instead of scrolling through scary (and possibly inaccurate) volumes of data on the internet? Even just a short walk, reading a book, or sitting in a local park can distract you.
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4 Reactions@kjoed53
if you want to look for iinformation on the web, look at medical sites only
NIh or web md.
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1 Reaction@maghera
I will continue to use AI to do research for me. That is a personal choice, not for anyone else to decide. The AI I use will reference medical sites etc., so I can see the source. I am not diagnosing myself and I am not basing my treatment on that. My doctor will determine that. I am preparing for my doctor visit.
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2 Reactions@kjoed53 I had no intentions to offend you.
I was a health professional and I know about misleading information.
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1 Reaction@maghera
No offense, just wanted to set the record straight. I let AI do the leg work and I vet the information according to the source. I'm 73 years old and I know how to identify misleading information.
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3 Reactions@tkablak Welcome to Mayo Clinic Connect! This program encourages people to share medical problems and answers based upon their own experiences. Members can also share professional papers and personal photos based on their own experiences and problems they are having. Again, welcome!
Have them test you fro Cold Agglutinin disease. It took two years for them to find this in me. One thing I would look like marble ( like Reynards disease) all over the body when I got cold. So many doctors don’t know about this disease.
My PCP suggested I get genetic testing. One thing I found is that I have MTHR Factor double gene defect -many many people do - but it gave us a path to navigate - an awareness that some systems in the body may be struggling and faulty....for me it helps to know that processing medications and supplements are slowed and detoxification pathways are challenged. It explained a lot when I ended up in the ER after taking pre and post op meds ( so many ! ) and the slow detox -or processing time gave me a really scary reaction -but at least the knowing helped.....and now I know to be very selective as to what meds or supplements I put in my body.