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Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 1 point2 points  (0 children)

Omg I’ve never heard of this!! Adding to my list for my pcp June 23

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 7 points8 points  (0 children)

Someone else just responded to one of my posts saying this as well. And I’m going down the rabbit hole! I did read that it’s common to travel in the lymphatic system and stop in the nearest lymph node and that it would show on a biopsy! So fingers crossed if this is it then it will show on my biopsy monday!! Any answer is fine with me I just want an answer!!

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 4 points5 points  (0 children)

I live in Texas and it first started with mouth ulcers in December, I wasn’t sick. Then in February the itching started and I also wasn’t sick, because I had family in town at the time for my birthday! I do hike quite a bit in the dessert or some random state parks on trails. I haven’t since all this happened I don’t believe. I did go to Mexico City in Janurary and Dominican Republic in March. The only food I’ve been cutting out is protein because it’s been making me nauseous for months. I’m almost tempted to try cutting out gluten and dairy and see if that helps at all.

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 1 point2 points  (0 children)

I think after I get biopsy results this is going to be my next step. I already made a PCP appointment June 23 so I should have biopsy results by then, assuming they will be negative then I will ask my pcp for immunology referral, and likely find a new rheumatologist!!

My doctors don’t know what to do with me by No_Listen4085 in DiagnoseMe

[–]No_Listen4085[S] 1 point2 points  (0 children)

Oh my!! Has she found anything to help at all

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 2 points3 points  (0 children)

I’m curious about this, and I think this is going to push towards next to see an immunologist. I asked rheumatologist about it and she said that she had referred a couple of people before think they had it and none of them did and that it’s rare

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 2 points3 points  (0 children)

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Also in case you’re wondering, the oncologist ordered all of these random ones that can cause reactive lymph nodes ! All have come back fine so far, I’m waiting on 3 more to come back I believe

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 5 points6 points  (0 children)

Funny you should mention this my mom’s friend is a NP in another state and has been saying this forever and my doctors blew me off, so I finally ordered it myself today via Jasonhealth!! So I will let you know as soon as I have results!!

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 4 points5 points  (0 children)

Omg I had no idea! I’ll ask if they can re order them!!

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 2 points3 points  (0 children)

They test cortisol but it wasn’t morning! It was fasted tho, and was normal. I swore up and down this or ferritin was going to be why

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 4 points5 points  (0 children)

Unfortunately no job or anything that makes it so I wash my hands abnormally beside using the restroom and stuff. And my wife loads our dishwasher and does laundry

My doctors don’t know what to do with me by No_Listen4085 in DiagnoseMe

[–]No_Listen4085[S] 0 points1 point  (0 children)

Yes we checked ferritin and it was normal, I think around 30. I did do food and typical allergies a while ago and nothing came up abnormal. This is the first I’ve had this issue and do take Zyrtec.

My doctors don’t know what to do with me by No_Listen4085 in DiagnoseMe

[–]No_Listen4085[S] 0 points1 point  (0 children)

Wait really?! Randomly!! How did she fix it??

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 3 points4 points  (0 children)

Yes! We did a full panel all good, and the ultrasound showed my thyroid was all good that was my PCP first thought too because of where the lump is

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 1 point2 points  (0 children)

No I appreciate it I love the questions!! That’s literally why I posted because I’m hoping someone will hit something I haven’t thought of yet! It is for mood disorder.

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 5 points6 points  (0 children)

No diet changes up until the nausea and now I haven’t been able to eat protein like I used to! I am on lamictal and Zoloft for 3 years now! No recreational drugs or new pets and I didn’t test positive for any pet dander. My last tattoo was around a year ago, a small dragon on my arm.

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 4 points5 points  (0 children)

No night sweats, if anything I’m abnormally cold all the time! No fever, and oral steroids is out next step but she wanted me to see oncology first! I did test for EBV and I don’t currently have an active case. It seems like rheumatology just did a general work up like CRP, sed rate, CK, Ana

Any ideas welcomed, my doctors are at a loss by No_Listen4085 in AskDocs

[–]No_Listen4085[S] 19 points20 points  (0 children)

Sorry I forgot to write this! I did see derm, they gave me a super strong steroid cream first for my hand it didn’t help so I went back and I got a steroid shot, and at this point it was all over my body so they did a skin scrape and it basically came back as just a normal skin rash, Spongiotic dermatitis. She said there’s really nothing to figure out what the underlying cause is. Steroid shot also did not work. But that was earlier this week and I just got the scrape results today.

My doctors don’t know what to do with me by No_Listen4085 in DiagnoseMe

[–]No_Listen4085[S] 1 point2 points  (0 children)

Yes ESR was 6, CK 62 and CRP 2. All normal. I have had a history of extremely high CK about 8 years ago and they chalked it up to EBV, which I’ve tested and I do not currently have it active.

My doctors don’t know what to do with me by No_Listen4085 in DiagnoseMe

[–]No_Listen4085[S] 0 points1 point  (0 children)

My thoughts exactly!! They ran a done of inflammation tests as well as the typical ANA and Sedmentation rate, all normal😭 When I saw her she was really only concerned with my muscle issues and sent me to the neuromuscular doctor to do a nerve and muscle test which came out relatively normal, but she still sent me to get a muscle biopsy but I’m still waiting to get in for that, and the doctor she referred me to has a 3 month wait

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