So I've been pretty sick for a while now. My mom has lupus, but it's very under control, so she knows what she's talking about when we go into appointments. I also do a ton of research, out of paranoia.
My symptoms are extreme fatigue, joint pain (redness, swelling, hot to touch), hair loss (without scarring), mouth sores, and neuropathy like symptoms. So far, I have been diagnosed with fibromyalgia (secondary to an autoimmune disease that they can't diagnose yet), hypermobility syndrome, and Erythromelelgia, which is opposite of raynauds phenomenon. The Erythromelelgia is also secondary to an autoimmune disease.
I've had a ton of blood work done, and found that my CH50 is high, as well as my ANA. All of my rheumatologists are telling me that my ANA could be elevated because of my mother having lupus. I believe this is the reason they're not diagnosing me yet, although I feel that I have enough symptoms to prove my case.
Am I the only one that thinks that it's a little strange that no one is diagnosing me yet? I clearly have systemic inflammation, and all of my symptoms are lupus symptoms. Am I missing something here? Is there something else they could be looking for?
I was tested for Lyme, and only one of my panels came back positive (there needs to be 4 to confirm the diagnosis), Vasculitis, my Rheumatoid factor was normal- in case it was RA, and all of the other related diseases/syndromes don't seem to really relate to the majority of my symptoms.
Anyone have some input, information, or stories about long diagnosises to share? I could really use some advice.
Thank you!!
My symptoms are extreme fatigue, joint pain (redness, swelling, hot to touch), hair loss (without scarring), mouth sores, and neuropathy like symptoms. So far, I have been diagnosed with fibromyalgia (secondary to an autoimmune disease that they can't diagnose yet), hypermobility syndrome, and Erythromelelgia, which is opposite of raynauds phenomenon. The Erythromelelgia is also secondary to an autoimmune disease.
I've had a ton of blood work done, and found that my CH50 is high, as well as my ANA. All of my rheumatologists are telling me that my ANA could be elevated because of my mother having lupus. I believe this is the reason they're not diagnosing me yet, although I feel that I have enough symptoms to prove my case.
Am I the only one that thinks that it's a little strange that no one is diagnosing me yet? I clearly have systemic inflammation, and all of my symptoms are lupus symptoms. Am I missing something here? Is there something else they could be looking for?
I was tested for Lyme, and only one of my panels came back positive (there needs to be 4 to confirm the diagnosis), Vasculitis, my Rheumatoid factor was normal- in case it was RA, and all of the other related diseases/syndromes don't seem to really relate to the majority of my symptoms.
Anyone have some input, information, or stories about long diagnosises to share? I could really use some advice.
Thank you!!
Why am I not diagnosed?
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