I have been having undiagnosed flares for the past five years. The symptoms are usually similar, but during each flare I have a few different ones that seem to take the lead. They almost always start with pain in my legs. First it starts with shin, then calfs, thighs and butt. The pain usually spreads randomly, but this time it started and sets in as a longer crushing pain.
The pain spreads to the joints, muscles and the eyes. It seems like organ pain. I also get muscle spasms throughout the body. I get very strong headaches that usually start behind one eye and feel like a tension headache. I also get long and short stabbing pains in my head. During my current episode and two previous ones, I also have very apparent neurological symptoms such as vertigo, brain fog, etc.
I have gastro symptoms as well, such as constipation, diarrhea, abdominal pains and upper right quadrant pain. I also have frequent urinary symptoms and sharp random pains in my groin, testicle and penis. I have also had blood in my urine. I have heart palpitations too. This is not happening with this flare for some reason.
My random symptoms are hives, especially in one patch on my left rib cage only, rapid weight loss (I have lost 10 lbs in one week and 30 total during the first episode), interrupted sleep, red irritated eyes, occasional sore throat, nasal drip, strong fatigue and occasional mouth sores. I have had MRIs, ultrasounds and CT scans, which were all negative. I am going for another brain MRI and ECG by next week.
My blood test shows ESR - 3 x negative, CRP - 3 x negative, CBC - 7 x always in range, metabolic panel - always in range, cortisol - negative, RA and lupus serum - negative, Lyme (ELISA) - negative, HIV - negative, ANCA - negative, ENAS - negative, Ferritin - slightly elevated, celiac panel - all negative except gliadin AB, IgG positive, TSH and free T4 - in range. Biopsies for celiac and Crohn's were negative. Do you have any ideas of what this syndrome could be? Please help.
Welcome to icliniq.com.
I am sorry that you have been through so much in such a young age.
I am thinking of Behcet's disease, also known as Behcet's syndrome. It is a relatively rare disorder that causes blood vessel inflammation throughout the body. Unfortunately, there are no classical laboratory tests in Behcet’s syndrome. The diagnosis is clinical.
In the absence of other systemic diseases (as you had a negative work up), the Behcet’s syndrome is diagnosed in patients with recurrent oral aphthous ulcers and two of the following clinical features:
The mild elevation of ferritin could be an indicator of inflammation since it is an excellent acute phase reactant.
For further information consult an internal medicine physician online -->https://www.icliniq.com/ask-a-doctor-online/internal-medicine-physician
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