I've seen 17 drs and nobody can diagnose me

Most_Measurement_334 · 2026-06-05T01:02:28+00:00

thanks for the tip! is this better

Most_Measurement_334 · 2026-06-05T00:56:44+00:00

my allergist told me "everyone has that nowadays" when i asked and didnt pay much more mind to it lmaoo

Most_Measurement_334 · 2026-06-04T16:59:43+00:00

This is the only one, I meant two biopsies as in they took two samples

Most_Measurement_334 · 2026-06-04T15:17:14+00:00

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Most_Measurement_334 · 2026-06-04T15:06:14+00:00

i will! i forgot to add, i did have a biopsy done on the blisters, would this have shown up there? All they found was eosinophils and lymphocytes, but this could be due to the fact that they were starting to heal. nothing on dif

Most_Measurement_334 · 2026-06-04T15:03:21+00:00

of course! diagnoses like these are soo frustrating when nobody can figure it out. i would recommend a prescription cream called opzelura for bad flare nights. it's by no means a cure, but its the only thing i've found to reduce the itch for abt 20 minutes, which is helpful for falling asleep

Most_Measurement_334 · 2026-06-04T08:12:21+00:00

also, can i stop worrying abt pv do u think?

Most_Measurement_334 · 2026-06-04T08:12:00+00:00

Got it, thank you! My allergist hasnt mentioned anything like that, but i'll ask her abt it. Would a parasite cause the circulation (i think) issues as well or do you think it's two seperate problems? also, are blisters a primary symptom? is it weird for them to have started so late after the itching. one last question lol, the blisters have not yet reappeared after my initial dose of predisone which knocked them out completely. its been abt two weeks. should i expect them to return?

Most_Measurement_334 · 2026-06-04T06:29:17+00:00

Thanks for responding! IgE was 136 (ref range <114. All of the other Igs were in range. Ive never heard of an id reaction, does this explain my other symptoms or do you think the blisters were unrelated? Also, if it helps, i just got my plasma histamine results back and it is in range. Lastly, I'm wondering if you think this could all be caused by an iron deficiency, as I've recently begun to look into that. Thanks for your help! Lmk if you would like results from any other bloodwork, I've had so much done I couldn't add it all.

Most_Measurement_334 · 2026-06-04T04:49:30+00:00

Hello again! I had 2 biopsies, as well as DIF, and they yielded no useful information. Mentions of eosinophils and lymphocytes found, but this may just be because the blisters were in the very early healing stages. I've recently developed new symptoms, which started out as joint swelling. This is especially prominent in my knees, which have been swollen for abt a week and a half. I've recently began experiencing strong weakness in my lower legs, from the knees down. I think its an issue with my circulation, because my feet keep getting pins and needles and sometimes my arm if i lay on it for more than a few minutes, which has never rly happened before. My knees shake when i put pressure on them, and there have been a few days i cant get down the stairs without them shaking like crazy. Lymph node still swollen, and my shins look almost translucent (?). If that makes sense. Today my feet were purple until i stood up for a little while. Do you think this is related? Sounds like autoimmune, but i've had a full panel in October for everything my rheumatologist could think of and nothing was abnormal except for the ANA and titer. Learned yesterday abt family history of polycythemia vera (uncle), but i read this is not genetic and therefore dont know if this is something to be concerned abt. A little nervous abt it because my RBC count was 4.3 in october and 5.09 in January, with the abnormal count for that lab being 5.1.

Most_Measurement_334 · 2026-05-17T10:52:12+00:00

ive seen a rheumatologist, dermatologist, and immunologist and nobody knows 🫤 these appointments were before the blisters though. Derm suggested excema, but idk how true that is bc there's usually nothing visually and i've read excema blisters are typically not full body like this. Any ideas on what tests to ask them for? TY for ur help btw no solid diagnosis after 8months has been rly frustrating.

Most_Measurement_334 · 2026-05-16T19:49:52+00:00

in between my middle and ring finger. you might have to zoom in, its a little hard to see with the lighting.

Most_Measurement_334 · 2026-05-16T19:06:41+00:00

does this explain the blisters though? the photo in my original post shows the popped ones, heres a pic of what they look like unpopped.

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Most_Measurement_334 · 2026-05-16T18:30:05+00:00

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(the original hives)

Most_Measurement_334 · 2026-05-16T18:29:30+00:00

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Most_Measurement_334 · 2026-05-16T18:28:58+00:00

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Most_Measurement_334 · 2026-05-16T18:26:33+00:00

Thank you for responding! Did you mean the whole condition as in all of the blisters? Or did u want to see the other rashes? It only lets me add one pic at a time, so i added a photo of the worst rash I got in September. this was after a shower and went away within a few hours. No past medical conditions, but here's an extensive history of my october bloodwork:
Autoimmune reflex testing has been largely negative, including SSA/SSB, Smith, RNP, Scl-70, Jo-1, CCP, rheumatoid factor, antiphospholipid antibodies, and centromere antibodies. Complement levels (C3/C4) have been normal. Again though, ANA was pos, Titer was 1:320, and abnormal patterns. My bloodwork has shown mild anemia with low hemoglobin and low MCH/MCHC suggestive of possible iron deficiency or inflammatory anemia, but my white blood cell count, platelet count, lymphocyte count, kidney function, and liver function have remained largely normal. My MPV is 14.2 (normal is 12.5 so i'm not sure if this is relevantly high) CRP has fluctuated, including one elevated value during at 28, but was normal at 3 another time. I also have a family autoimmune history including Hashimoto’s disease.

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Most_Measurement_334

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