20853006 tn?1547666489

I am still dealing with symptoms three years later.

I have a brain scan scheduled for next Monday. And I have an abdominal scan scheduled for the Monday after that. I have already had two abdominal scans done before this (I am not even sure why they keep doing abdominal scans). I have also had an ultrasound done on my abdomen and one of my legs (one leg is larger than the other leg). The only thing that has been revealed so far is elevated inflammatory markers, an enlarged spleen, and an enlarged liver. I have noticed that all of the symptoms I have been experiencing have intensified. The symptoms also last longer now. I am experiencing more headaches, muscle pain, brain fog, burning nerves, blurred vision, tingling, joint pain, acid reflux, fatigue, sinus issues, numbness, canker sores, burning mouth, dizziness, etc. I have lost almost 100 pounds within the last year. I did not attempt to lose any weight. I did not change my dietary habits. I did not try to exercise. I have been referred to an immunologist, rheumatologist, gastroenterologist, otolaryngologist, and hematologist. I have only been seen by the hematologist and rheumatologist so far. I have noticed that my WBC has declined. My WBC is still within the normal range, but it is on the low side of normal. My WBC has always been on the higher side of normal. And I know that your WBC can fluctuate, but the past few times I have been tested, my WBC has been on the low side of normal. I have had a ton of blood taken for tests. They have tested me for autoimmune diseases, syphilis, gonorrhea, chlamydia, Trichomoniasis, Lyme disease, thyroid disease, diabetes, b12 deficiency, iron deficiency, vitamin d deficiency, HIV, etc. I can't remember all of the tests that they have performed on me. My b12 is a little on the low side, but I know that is not what is contributing to all of my symptoms. My b12 has been normal at times through all of this. I have been tested for HIV seven times. I have been tested four times with the combo test. And I have been tested three times with the PCR test to see if they can detect a viral load. Nothing has ever been detected from these tests. I am highly stressed out. I don't know what to do. I feel like my illness is just getting worse.
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Avatar universal
Non celiac gluten sensitivity, try gluten free diet.
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20853006 tn?1547666489
I have an appointment with the gastroenterologist this Wednesday. My acid reflux has gotten to the point where it is almost unbearable.
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Avatar universal
Just a message of support really.

I am sorry to hear of your symptoms and that you have had all this testing with no explanation.  I know it is very frustrating.

I'm afraid I cannot offer any diagnoses or solutions but it sounds like they are searching for the cause(s) of your illness.  I hope you get some answers soon and that it is easily treatable.
Helpful - 0
Thank you so much. I have spent a lot of my time crying. This has been extremely stressful.
Avatar universal
Have you been tested for antibodies to see if you might have had covid?  You say you were tested for current covid, but were you tested for a past bout you might not know you had?
Helpful - 0
I have been tested several times for COVID. I am not sure if the tests they used could tell if I had been previously infected.
That would be an antibody test, not a PCR.  Of course, if you've been vaccinated, I don't know how that affects this test, but it's a widely used test to see if someone had covid that isn't present anymore.  
Actually, I didn't notice you say you've had this for 3 years.  If you've had all these symptoms for that long it isn't covid.  I only mentioned it because covid is a current pandemic and long haul covid causes many of the problems you're describing.
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