u/sarcazm107

Let me preface by saying I cannot move at this time and my resources are extremely limited due to being on SSDI and relying on my domestic partner's employer to mainly cover rent and decent healthcare costs where we live. Also, I cannot drive anymore, and flying requires multiple surgeries which I can't have, so travel is out of the question.

I had a very bad doctor who was very violent with me and technically committed malpractice multiple times but didn't have any other options where I lived for one of my rare diseases. He formally terminated our relationship last year when I refused a treatment I did not need that he had administered once before that had sent me into shock. My domestic partner was there, and when this doctor kept threatening me my partner stood up for me while the doc was screaming at me and told him to stop screaming at me and trying to bully me into doing something that will do me harm, and reminded him that when a woman says No she means No. This doctor is a hematologist/oncologist and their practice name dropped the hematology from the name and it is now this massive footprint where I live, and got bought by McKesson.

There hadn't been other hematologists in the area for adults anyway aside from the HTC I had originally been going to where my doctor happened to be the director and administrator of the hospital's dept. and ghosted me for 2 years worth of appointments, and teaches all the up and comers going into the HTC and the hospital anyway. However, now that McKesson owns the other major place with hematologists/oncologists/infusion centers that can access chest ports/picc lines etc. they bought out all the other private practices as well as corporations so now they're all under the same company as 'the terminator', and on top of that, every single hospital including the one with the HTC, is outsourcing their hematology, oncology, and infusion services to their company as well. The doctor also now has privileges at every single hospital where I could go. Anywhere I could possibly get my port accessed, he has access. I can't get in to see a gynecologic oncologist because I'd need one with privileges at a level 1 trauma center for the multiple rare diseases and he has access to all of those, on top of that all the gynecologic oncologists are now employed by his company and I'm a terminated patient.

I realize how insane this sounds. It is not lost on me that I sound like I'm having some sort of paranoid delusional psychotic break or something. However I assure you I am not. And this doctor is malicious and protected and there is no point in doing anything to try and fight him as it only causes retaliation and I'm already screwed. However now that he's gotten even Federal credentials and it's so much cheaper for all the hospitals to outsource to McKesson operating as this group I am beyond screwed. We can't move without my partner having a new job and health insurance ready to go, can't do telehealth unless it is within the state due to the laws here, can't fly without surgeries, can't have the surgeries due to the situation I'm in, can't drive due to my health problems and even being a passenger in a very comfy new car with my current combination of BS after just a 25 mile drive to and from a short talking appt. is causing enough pain to apparently make me grab my abdomen and moan and black out unconscious from pain.

Even if I could set up telehealth with a doc in a different part of the state they insist I see them physically once, which I can't do at present even if insurance would let me due to an exception due to inability to travel. We already tried finding out of state physicians licensed to work in my state as well and that was a no-go even using special services who search for that specifically - they don't exist, and the advice both myself and my complex case nurse manager were given was to contact this rare disease research dept. in Indiana to see if anyone wanted to get a temporary license to practice here or something to do a single telehealth visit which doesn't help much since I already know my list of problems needing solving not getting touched.

So yeah. I'm terrified. I'm stuck. My partner feels horrible. I'm in a ton of pain. And my good doctors can't even get anything done anymore, and even if I was rich and had the money for concierge medicine or cash-pay docs it wouldn't matter because of the level 1 trauma center requirements for my conditions. I think I'm losing my mind...

I had a phone appointment with a genetic counselor today to go over the first of two genetic tests I did - luckily covered by insurance - through JScreen after passing their questionnaires regarding my ethnic background, family and personal health histories, and a few other things. The tests were done through Myriad Genetics: 1) BRCA and Hereditary Cancer Risk Screen (why I wanted to do this in the first place since I couldn't get anyone to do a BRCA test for 5 years of various doctors and myself trying - though this tests for a much larger amount of genes) 2) Women's Health Foresight Carrier Screen.

The call did not go well. The genetic counselor was supposed to be going over the Women's Health Foresight Carrier Screen Results, which picked up multiple rare diseases I already have, a couple things I was unaware of but may or may not be symptomatic for, and missed things that weren't being tested for but also missed things it should have due to not testing the intron mutations, setting the VAF% too high, and various other reasons. That is at least logical though, even if I don't like it.

What isn't, and what makes me want to scream, is having the genetic counselor spend the majority of her time on the phone with me telling me the results don't matter because I'm not planning on having a baby and my age the fact that I had a hysterectomy due to cancer makes the results irrelevant so I shouldn't concern myself with them. This is a WOMAN by the way. People seem to think these attitudes prevail towards male health providers but not in my experience they don't.

I WANT TO SCREAM!!! I AM NOT A FRIGGIN' INCUBATOR!!!

MY GENES are relevant to MY HEALTH. This is not a test meant to rule me out for Eugenics purposes because my genes disqualify me from participating as a Handmaiden being used to help bring about Nietzsche's Ubermensch. GRAAAAH!

Has anyone else in the USA ever utilized this resource/company before to try and get WGS and possibly metabolic/proteomic profiling done in order to get involved in some sort of research study or registry (likely to be used for biopharma purposes and drug development or academic research)? I'm curious because they're in Germany but the protections and purpose seem to be closer to what we were doing about 15 years ago and they seem to take a special interest in people with multiple founder effect mutations in endogamous ethnic groups like myself while possibly also looking at the information more holistically as opposed to a strictly Mendellian PoV, with a lower VAF%, more research into introns, polymorphisms, and so on.

I ask because my JScreen results came back from Myriad genetics and I just caught 2 more founder effect mutation "Pokemon" to add to my ever-expanding list and as far as clinical significance goes standard tests and rules don't account for anomalies like myself and others in similar situations even when testing specific isolated populations with genetic bottlenecks as a general rule.

If anyone has any tea, please feel free to spill. Thank you!

I'm not sure if a tag is necessary for this as I'm not sure if it is across all SSA or not.

When I log into my account and check my monthly gross benefits it has always been in both dollars and cents. My monthly Medicare Premium deduction is also in dollars and cents. However, when I go to the top of the screen to look at a Benefit Verification Letter it rounds up the total monthly gross benefits rounded up to the nearest whole dollar, Medicare Premiums are in dollars and centers, and it gives my monthly deposited benefit and says it must round down to the nearest whole dollar to get that math.

Does anyone know why the information on the actual account and BVL is different when it comes to rounding as opposed to just giving the actually accurate information on the BVL and then still adding that disclaimer about rounding down (like when Medicare deductions and monthly benefits don't zero out as they sometimes don't)?