TL;DR: I was falsely accused of being a hypochondriac/having an untreatable genetic disease for nearly two years, and was denied proper treatment. Now I'm partially disabled, unemployed, and my student loans are going back into repayment. I've had to turn down a bunch of opportunities for work/ graduate school at really prestigious places because of my health, but now I have a year long gap on my resume. Everything is ruined and I don't know what to do other than kms. I need advice.
I guess it's best to summarize the chain of events that led up to this: >Be me in April 2016 >Wrapping up junior year of my mechanical engineering degree >See my primary care doctor at the local clinic about some flashing lights that I had started seeing more frequently >Get referred to ophthalmologist #1 >Ophthalmologist #1 ends up rescheduling me three times so that I don't see her until September 2016 >Finally get to the appointment and she says that she doesn't see anything wrong >Get referred to neurophthalmologist and see her in October >Does a couple scans, doesn't see anything >Says I'm probably just having a migraine, nothing prescribed, no follow up scheduled >Flashing lights still getting worse, and now starting to have a high pitched whine in my ears >Vision suddenly gets way worse after a double all-nighter at the end of the semester >Also around this time I go to the dentist to get some cavities fixed >Something in the shots they gave me set off some kind of nervous system reaction >I start uncontrollably shaking for the next hour and they have to cancel the procedure >My mom who works at the clinic calls in to ask wtf they're thinking, and gets me scheduled for early January 2017
>Ophthalmologist #2 notices that I have damage to my retinas and that they're atrophying >She says it looks sort of like I have a form of inherited retinal degeneration called retinitis pigmentosa >But she's thrown off by the fact that it's much worse in my right eye and I have no family history of RP >She refers me to see ophthalmologist #3 at the nearby university hospital for confirmation >Ophthalmologist #3 cancels my appointment for late January 2017 and moves it out to April >Figure there's some kind of mistake and try to reschedule >She cancels it again and moves it out to May >Having rapid vision loss so I call again and basically beg to see someone >See ophthalmologist #4 in early February 2017 even though this isn't her sub-specialty >She ends up playing a game of telephone with ophthalmologist #3 who is refusing to see me until I see a geneticist >One of the diagnostic tests involves injecting a dye that can cause severe allergic reactions, so you have to sign a waiver >Warn her that I'm really allergic to lots of things, but she laughs and goes along with the test anyway >Get a reaction and have to be injected with diphenhydramine >One of the other tests was an electroretinogram, which bizarrely showed that if I had RP then I should be colorblind, which I'm not >She says it only seems like I'm having rapid vision loss because it's just now starting to creep into my central vision, which is making me anxious >She ignores the fact that none of my relatives have this
Matthew Diaz
>Read through a bunch of medical publications to figure out what I have since my doctors are obviously bullshitting me >Find something that perfectly matches what I've been experiencing: autoimmune retinopathy >People with AIR have sudden onset vision loss and see lots of flickering/flashing lights >AIR causes electroretinogram findings that look exactly like mine, and it can also be asymmetric between the left and right eyes, unlike RP >AIR also makes sense because my mom's side of the family has a lot of autoimmune diseases >But AIR is extremely rare and looks like RP, so ophthalmologists prefer to tell everyone they have RP, which is untreatable >Finally get in with the geneticist early March 2017 >She comes to the conclusion that, based on my family tree, at least one other relative should have had this >Mom came to the appointment and broke down crying, prompting the geneticist to chew out Opthalmologist #3 over the phone >Opthalmologist #4 works me in the next day, and has ophthalmologist #3 step into the room for a few minutes even though she is still refusing to see me >Ask here about the diagnosis of AIR vs RP >"Haha maybe you should try letting us manage your care from now on" >Says that based on the pattern the pattern of my vision loss and my electroretinogram, I have a (related) condition called AZOOR >Neither of them offered any options for treatment or suggestions for what to >Scheduled me to see ophthalmologist #5 two months later, who would hopefully be able to do something >Still having rapid vision loss, so I see ophthalmologist #6 at a private practice and get an interim prescription for prednisone while I wait >The prednisone isn't a cure but it manages to reduce the flashing lights somewhat, which is progress >Around this time I start getting tingling, tremors, and electric shock sensations
Blake Wood
I know lots of people with macular degeneration who function fine with full time employment and schooling. Being blind isn't that rare of disability user.
I'd talk to a lawyer though and see if you could sue the doctors.
Jace Lopez
Who tf do you expect to read this? Either get to the point or go start a blog lul
Asher Smith
>Finally see ophthalmologist #5 who says he isn't sure if it's AIR or RP >Ask him about the other nervous system symptoms but says they're probably from the medicine >Tells me to taper off of prednisone and come back in two months for another electroretinogram >Taper off of it and sure enough the flashing lights get worse again >June 2017, at the electroretinogram lab >One of the technicians is having a hard time getting the contact lens in and chooses not to continue with the test >She fucking quotes the hippocratic oath at me because she doesn't want to scratch my eye with the contact >Literally in tears begging her to put it back in so they move forward with treatment before I lose more vision >Tapes the electrode to my forehead instead, invalidating the test results >Without ERG data for whether or not the prednisone worked, ophthalmologist #5 prescribes cellcept, a mild immunosuppressant >Still having a tremor and some nerve issues, and see a neurologist at the local clinic >He attributes them to prednisone withdrawal and anxiety >Meanwhile all of this is really fucking over my academics >Have to take an incomplete in a couple of classes and my graduation gets pushed out a semester to summer 2017 >A couple more followups go by with ophthalmologist #5 >At best the cellcept is slowing the progression slightly, at worst it's not doing anything >Ophthalmologist #5 says he isn't sure confident enough that it's AIR to prescribe the heavier duty treatments that they normally use for it >Vision gets really bad again in August from the stress of getting in all the deliverables for graduation >Call into the uveitis clinic and ask if it's okay to start taking some leftover prednisone since that seemed to help last time >Vision calms down somewhat after essentially being forced to self-prescribe treatment
Justin Phillips
>Ophthalmologist #5 refers me out to his colleague at the NIH, supposedly for anti retinal antibody testing >Fly out to Washington DC in October with mom to see ophthalmologist #7 and geneticist #2 >Ophthalmologist #7 says she thinks it's genetic, but geneticist #2 thinks it's autoimmune >They run a bunch of tests, draw a bunch of samples, and tell me they'll get back in a month with results >Before leaving I have them triple-check to make sure they were drawing the anti retinal antibody labs >Each time they said yes they were >Vision is still getting worse and it's gotten to the point where I can't leave a darkened room because of light sensitivity >December 2017, really started to not feel well >arthritis in my jaw flared up and I couldn't open my mouth, totally exhausted and sleeping 12 hours a day, feeling physically ill >Ophthalmologist #5 says it's just anxiety >It continues to get worse throughout December and January >The final straw comes when I start getting uncontrolled muscle movements in my hands around Christmas >Can't even use my phone because my hands keep moving involuntarily >Go back to see the same neurologist in January 2018 >This time he notices I'm losing sensation in my hands and feet and he says it might be a complication of the cellcept >Spend the next month and a half trying to contact ophthalmologist #5 who won't return any of my calls or emails >Finally get to the followup with him and ask what to do >He agrees that the cellcept isn't helping and might be responsible for the neuropathy >The genetic testing from the NIH *still* isn't done after five months of waiting, but he thinks I might have RP instead >He wants to take me off of medication entirely, but I tell him no and have him switch me to a different medication >Call the NIH to ask wtf is going on, and it turns out that they forgot to run my sample for five months
Michael Morgan
>They found a variation in one of the copies of the gene that causes RP25 >They try to attribute my vision loss to a previously undescribed dominant form of RP25 even though it's a recessive disease >They ask for samples from my mom so that they can sequence her genes too >March 2018 now >The nerve issues still aren't getting better since switching medications >BUT my vision is finally starting to improve on methotrexate, proving that I was right all along and that my disease isn't genetic >Significantly fewer flashing lights and my blind spots are beginning to fade slightly (blurry/ horribly distorted instead of missing) >Visual acuity is better at the next followup >Ophthalmologist #5 tries to brush it off by saying the methotrexate is helping with a secondary autoimmune response >Hear back from the NIH again >My mom has the same exact genetic variant as me even though she's unaffected by vision loss >Ophthalmologist #7 still tries to insist that it's genetic based solely on the fact that I'm young and young people get RP >This is even though genetic testing was negative, I'm getting better on methotrexate, and everything seems to indicate AIR >Follow up with neurologist >Partial loss of sensation has progressed up my leg almost to my knee now, mean it's probably part of the same autoimmune problem >Still waiting for an EMG test next week to assess the extent of the nerve damage >Still have no idea what the underlying autoimmune condition is >The eye institute at the local university is pretty much ghosting me at this point >I'm on medication that's sort of working, but my disease is absolutely not under control I know it sounds like I'm exaggerating all of this, because there's no way that medical care could be so terrible, but I'm not. I still don't understand how this could have gone so badly. I'm lost and I desperately need advice on what to do.
