u/monsieurvampy

I have previously posted how I started doing Appointment Visit Letters and related.

1. https://old.reddit.com/r/covidlonghaulers/comments/1qsga2l/a_letter_to_the_doctor_at_the_appointment_to/
2. https://old.reddit.com/r/covidlonghaulers/comments/1qwcpb7/update_letter_to_doctor/
3. https://old.reddit.com/r/covidlonghaulers/comments/1r1e2g4/update_letter_to_doctor_neurology/
4. https://old.reddit.com/r/covidlonghaulers/comments/1r6ptpa/going_nuclear_doctors/
5. https://old.reddit.com/r/covidlonghaulers/comments/1sebn7o/letters_finally_backfired/

The above is for reference. It's not necessary to understand this post. I sent about a week in advance a very lengthy and comprehensive appointment visit letter where I also have sections specific to each specialty that I am seeing. I called out my Neurologists attending (I see a resident) who basically dismissed my Long COVID and Fibromyalgia diagnoses because they were diagnosis of exclusions and did not provide a suitable alternative (or disprove the these diagnoses). I also call out the case worker who works with the Neurologist because (paraphrasing) "until they can figure something out" but that would require testing, a lot of it. Which doesn't happen.

My neurologist read all 30 pages! Her attending for the day also read it. I don't know if the attending I call out (as a red flag) read it though but that doesn't matter. They confirmed the existing Long COVID diagnosis. I also had rheumatology recently confirm the existing Fibromyalgia diagnosis as well.

Neurology wants to wait for my third neuropsych testing to determine where to go so I still have a long list of blood work that I am requesting based on research that I've done. I do see Allergy/Immunology in July.

PCP however did not receive the packet even though I send it in a week in advance and I have a 30-minute appointment in two months to discuss it, but that will likely be outdated by then.

Why is this 30 pages? I saw a cardiologist for a second opinion and put a ton of work into creating a comprehensive overview of my self essentially so all appointments this month I've been editing and sending it. Future Neurology letter will probably be down to 15 pages or so but its mostly just going to be repeated stuff. Bullet points do take up more space.

I know my upcoming Pain Medicine appointment it probably will not be read because staff told me when I faxed it three weeks in advance. I do have a referral for Neurosugery so they will probably get something similar.

I was considering adding a section about Ownership and Responsibility, that basically centers that no one wants to take point and everyone just passes me around like a hot potato. If I can't get a doctor to order a test that is recommended by either clinical research (it does exist and can be ordered) or by lets say the Department of Veteran Affairs then I clearly am getting subpar care. I'm also still waiting to hear back from my PCP's Medical Director about this "suspected" bull that the doctor has been pulling.

I did see Behavioral Medicine and no Somatic disorder here. Final findings report is to be signed in early June. I read the draft.

I don't think any of this helps my SSDI application or my Federal student loan forgiveness but its at least a step in the right direction.

AnimeTosho.org is now closed. Admin released a data dump (torrent is 1.01TB). It's not the complete site, but its most of it.

Downloading the torrent now which will only be seeded for a few days. This is really an FYI.

Details regarding the data dump: https://animetosho.org/about/data

Initial Shutdown Notice: https://animetosho.org/about/shutdown

Shutdown Notice Update: https://animetosho.org/about/shutdown2

I have recently been diagnosed with Heart failure with preserved ejection fraction (HFpEF) or Chronic diastolic (congestive) heart failure depending on what medical office terminology I use. This is following a right heart cath of March this year. (with a wedge test)

I am pushing back against this diagnosis because the right heart cath was during a very atypical event, specifically a high blood pressure and water retention (it was super high and this like never happened before.) I'm confident in what I was doing (crazy amounts of sodium and fluid intake increases) were to blame for this.

I saw a cardiologist for a second opinion, who thinks I don't have a cardiology issue. This was one abnormal result. I've had echos and a previous right heart cath last year with an exercise component.

My normal cardiologist, was technically their attending as my cardiologist is a resident who kind of just pawned me off onto Pulmonary said that no matter what I did, the diagnosis would remain the same.

My pulmonary doctor is like you need to see cardiology though I do have a follow-up in June. He is retiring. The second opinion cardiologist is also retiring so no follow up with them.

I did push heavily for my pulmonary doctor to order a Heart MRI which is scheduled for later this month. Though I may need to go through the prior auth and all that process again because I might have to go to a different City to have it done due to weight.

Due to recent events with doctors recently, I've been writing some very spicy letters that are fairly comprehensive, after all I have like 4 years of medical history, where 2 years of that is at least 1,000 pages. My normal cardiologist, so the resident did say he felt bad but honestly I just want doctors to run test. Most of what I'm asking for is blood work.

I'm essentially pushing back against the diagnosis because I am tired of doctors dismissing the Long COVID diagnosis that I already have for various reasons. I want answers, but I also want accurate answers. I'm not looking for a cure. My shortness of breath (on exertion), lightheadness, and dizziness symptoms are not the main symptoms that I am concerned about. I am concerned about my physical fatigue and cognitive fatigue (mostly this) but heart failure doesn't explain the cognitive fatigue. I didn't push Cardiology to blame the heart failure on COVID, even though I should. I have a follow up in August.

I've been prescribed Farxiga which I am very reluctant to take. I've known about this medication for months already. That means I've done enough research to have significant concerns over what it does and the potential side effects.

I am growing very tired of no doctor wanting to take responsibility and ownership.

Edit1: I have taken Faxriga. I'm not thrilled with this decision. I haven't spend much time on this but my fatigues (physical and cognitive) are constant but are fairly low level. At the end of the day I would describe what I have is an endurance issue, which means I have to be doing something to effectively reach an accelerated limit. I try not to do research as I shouldn't have to be my own doctor but from what I've glanced at fatigue seems to be a constant, not shifting in capacity.