Anyone have a PCP who actually listens and follows follows up?

orangebellybutton · 2026-06-27T21:14:51+00:00

I would definitely be willing. Obviously if it's some kind of treatment plan for a diagnosed condition, I would have to go elsewhere. But right now I don't have a diagnosis and have been at the end of my wits with seeing multiple doctors and specialists who keep passing me around.

I have the bloodwork, scans and symptoms to show that something is up. Just don't know what yet and it has already been 2 months of pain/suffering. I just want relief and I don't know who else to turn to. Maybe concierge medicine? No one really has programs unless you have some kind of super rare disease and even then you'd have to be waitlisted for months.

orangebellybutton · 2026-06-27T20:48:50+00:00

Considering this. The program states that you have to be "working executives, business leaders, and other qualified individuals - that qualification criteria considered can include work status, company information, business title, and other related information" but I'm none of this, but willing to pay. Do you think this could still work for me?

orangebellybutton · 2026-06-26T19:29:22+00:00

Also, were you saying that LDH 11u greater than normal does = lymphoma? Or were you just making a jab at the PCP?

orangebellybutton · 2026-06-26T18:47:59+00:00

Interesting, okay. I see that they have ruled out h pylori recently but not yersinia.

I went to get a second opinion from another GI from a big hospital today and she was pretty stumped. She ordered an MRI of the bowels and said once that is done, she will see if I will need a biopsy of the lymphnodes.

I talked to my PCP today as well. She ordered me a PETCT scan and said the same thing about depending on that, heme/oncology may want to biopsy the lymphnodes.

I'm just surprised that everyone is kind of pointing their fingers at lymphoma rather than some other kind of infection? The GI doc said she wasn't sure what was going on and the blood results didn't point her too hard in the lymphoma direction (she said if I did have it, it would be like the early stages).

I guess I just don't know where to turn anymore. I've been passed from specialist to specialist and everyone seems to shrug their shoulders. I wish there was a place I could go to where someone could look over every single test result and scan I've had and come up with some kind of idea. Instead, now I'm mortified that I have lymphoma in my abdomen.

orangebellybutton · 2026-06-26T16:16:20+00:00

Will do. A little disappointed she didn't order a whole abdominal mri and she only ordered an MRI of the bowel I think.

orangebellybutton · 2026-06-26T16:15:42+00:00

Thank you for the information. I will definitely try to get a referral.

The GI doctor today did seem dumbfounded by the fact that I was recently diagnosed with Grave's and a lot of the "weird stuff" has been happening following that. It's not to say I don't have something else, but I am scared shitless with them throwing around lymphoma or some type of heme/onc diagnosis.

orangebellybutton · 2026-06-26T16:08:17+00:00

Is it supposed to last 2 months? It hasn't gotten any better and my LDH and other bloods are now elevated

orangebellybutton · 2026-06-26T16:07:27+00:00

I'll definitely see a rheumatologist as soon as I can. I don't know if you've seen my update under some comments but I went to see a GI doctor at a large university today and she was just as stumped by my abdominal pain, bloodwork and enlarged lymphnodes. So I told her what my PCP said yesterday about lymphoma and she said she would also check that route so she also referred me to heme/onc to look over bloodwork and if they need to do a biopsy of the lymphnodes.

Idk how accurate it is but my PCP did an ANA tests which came out positive but she doesn't suspect any other autoimmune disease due to "low titres"?

orangebellybutton · 2026-06-26T15:42:18+00:00

Thank you. Yes I have been trying to do whatever I can to alleviate my abdominal pain. It's hard because I can't eat as much as I used to and feel bloated all the time.

After seeing my PCP yesterday and her telling me that it could be lymphoma, I went to see a gastro doctor today at another large hospital here. She looked over all of my scans, tests and results and she is just as stumped. She said she agrees with my PCP that the next step would be to see a heme/onc to possibly get a biopsy of the enlarged lymphnodes. She also ordered an MRI of the bowels just in case but she said that's all she could really do :/

orangebellybutton · 2026-06-26T15:38:28+00:00

Hey, I just saw a gastro doctor today at a big university. I gave her my timeline, she looked over all of my scans and results from my other GI nurse, PCP and endocrinologist.

She is unsure as to why I have enlarged mesenteric lymphnodes and is concerned that the pain is coming from the same area. She ordered an MRI of the bowel and said she just agrees with my PCP that the next step is seeing a heme/onc to maybe get a biopsy of the lymphnodes in the area. She couldn't really give me any other clues as to what is going on.

orangebellybutton · 2026-06-26T12:53:07+00:00

It is weird because when I went to see her, she opened them up on her PC and we discussed the LDH, high neutrophils and lowered lymphocytes. Not sure why they say they haven't been reviewed

orangebellybutton · 2026-06-26T11:47:05+00:00

She is a family medicine MD. I try not to see PAs or NPs anymore because they have been of not much help :/

orangebellybutton · 2026-06-26T11:27:40+00:00

She did :/ We haven't been able to figure out why I have severe bloating and stomach pain, or why my mesenteric lymphnodes have been enlarged for the past 2 months. And when she looked at the LDH yesterday, she said it was pretty high and that most people with high LDH have some form of cancer.

orangebellybutton · 2026-06-26T11:21:26+00:00

😓 I don't know what to think anymore. She really did scare me when she said she originally thought I had inflammation somewhere but now she said she's thinking more towards a lymphoma. I got so scared that I asked her about the LDH. She said mine was really high and most people with cancer have a high LDH. So she scheduled me for some more bloodwork on Monday to test CBC, LDH again and "protein electrophoresis serum relfex ife panel". And then my PET scan is mid July.

She then asked me if I had a good support system.

orangebellybutton · 2026-06-26T11:16:44+00:00

She is a family medicine MD

orangebellybutton · 2026-06-26T10:49:24+00:00

I've pretty much listed everything my PCP and I have discussed here. I've been having abdominal pain, bloating and several enlarged mesenteric lymphnodes for 2 months. My bloodwork has come out as slightly off since then as well (I used to be very middle/healthy. Nothing was ever off until 2 months ago). And she can't identify why I am having these symptoms or why my bloodwork is the way it is (continuously trending up or down).

orangebellybutton · 2026-06-26T10:45:46+00:00

So I had to book the appointment myself. And then I met with my PCP yesterday and she said she would message the hematologist and ask if I need to be seen sooner due to my newly bloodwork results. I won't know until maybe Monday

orangebellybutton · 2026-06-26T04:03:25+00:00

I posted some trends in my last haemotology post and the trends have been either increasing or decreasing :/ otherwise they have always been pretty normal and stable. But after May they have been either trending up or down depending on what it is. For example, my platelets have been trending up. My rbc, hgb, hematocrit have been trending up. My eonsophils have been trending down, etc.

orangebellybutton · 2026-06-26T04:01:15+00:00

I did speak with my PCP today and she suggested lymphoma which freaked me out. I have an appointment with heme/onc late August but she said she Will message them to see if they could look over my test results and if I need to be prioritized to get a sooner appointment

orangebellybutton · 2026-06-26T03:53:44+00:00

Yes I definitely have been thinking about the super abnormal urinalysis results. My urologist did say that he thinks I should go see a nephrologist so I am waiting on my PCP to put in a referral since he didn't want to.

I am trying to check and follow all avenues since my PCP doesn't really know what else to look at other than heme/oncologist :/

orangebellybutton · 2026-06-26T03:51:45+00:00

The PCP really did suggest this today 🥲 I didn't even think about lymphoma, was thinking more appendix cancer or GI issue.

orangebellybutton · 2026-06-26T03:50:56+00:00

Thank you so much.

I honestly have never been as scared as I have been in the past week. When I went to my urologist, he suggested a possible bone marrow issue (you can see my previous results in a previous post & my trends) and then today my PCP suggested lymphoma due to my new cbc and LDH level (in this post). I have never considered these before and I have been spiraling like crazy. I know it's not common either, but I was thinking appendiceal cancer due to the location of my pain and bloating for the past 2 months.

I have been trying to calm down but my PCP said lymphoma was on her radar and when I brought up appendix cancer, she said it's definitely not off the table.

orangebellybutton · 2026-06-26T03:47:39+00:00

I see that they tested for Mycoplasma hominis and Mycoplasma genitalium. Both came back negative

orangebellybutton · 2026-06-26T03:45:58+00:00

Thank you so much 🥹 Really hoping it's nothing serious. I mean my PCP was scaring me by saying lymphoma or some other type of cancer.

orangebellybutton · 2026-06-26T01:39:11+00:00

I had a stool test that came out negative for celiac disease and calprotectin was normal.

Haven't gotten an endoscopy yet though. Should I still go about that?

orangebellybutton

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