Hi everyone, I finally had the appointment yesterday and have to say it went just okay. I tried to prepare but ultimately I guess I wasn’t prepared enough because she ended up asking me questions like, “ what were the symptoms you had when you went to the other Rheumatologist?”
I have a hard time remembering alot of things in general and with this question among others, I let my anxiety get the best of me, felt that she was siding with Dr. Lee which I realize now may not have been the case.
Long story short, she goes by the American College of Rheumatology diagnostic criteria and doesn’t care much about genes associated with lupus. That I have some worrying symptoms but as others have mentioned, do not fit the criteria for a complete diagnosis of Lupus. So I am to get more testing done and then see her in person for a follow up.
I did find out that the mouth ulcers associated with Lupus are not painful and on the gum area; mine are soft tissue and my rashes may not be associated with Lupus. I will post a picture though. I get alot of rashes (not butterfly or discoid or blistery) and I wouldn’t say it’s a sunburn either, I tend to cover up and add sunscreen. My IgE is actually low but I do have dermatographia.
Now that I have calmed down and learned about the ulcers, I am not sure if I am even close enough to the range of possible lupus. I have high ANAs (highest 1:320) homogeneous, five genes I believe 3 or four that are homozygous, fatigue (normal thyroid levels), continual anemia (for which I supplement and if I don’t I become anemic again) muscle aches (calves and sometimes arms) and what feels like being warm but no fever, Paresthesia and small fiber neuropathy, forgetting things and word finding, randomly bouts of vertigo, Raynauds, and IBS and Autoimmune Gastritis, mouth ulcers (but painful), hairloss but no alopecia areata. My platelets are most often between the bottom range and 100k, paranoia and anxiety at times. Mild arthritis in neck and lower back (i think osteoarthritis though)
I’m not looking for advice on supplements or Lyme disease so please do not mention them. I’ve researched quite a bit, thank you in advance, I’m just trying to get answers but not for remedies.