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.
I'll fork Dentacoin and call it Opthalamicoin, user.
Ian Moore
I read every word, OP. I am a third year medical student who is beginning the application process for a residency in ophthalmology. Stories like this inspire me to be the best that I can be. Thanks for sharing, user. I’ll keep you in my prayers. I know that this shit is terrifying. When I was 16 I was diagnosed with a rare granulomatous eye disease that doctors told me may cause me to lose my sight. I was lucky enough to have the lesions surgically removed and have had no recurrences so far, but I can identify with what you’re feeling. Hang in there.
Eli Gomez
Go to a private physician with a full history and no predisposition as to what disease you might have. Go see a psychologist too. It sounds stupid but you're blogging on a biz board. You obviously need to talk to someone, psychologists do that.
Sebastian Ortiz
Doctors try to fix the symptoms, but not the causes. 1) Find out what CAUSES your symptom in the first place 2) Use The App "Ada" to find out what autoimmune condition you have 3) Remove food that promotes disease (animal protein & dairy)
Noah Powell
In all seriousness, what this bizbro said
Daniel Ramirez
I can see why they think you are a larping retard.
Nathan Phillips
Look it seems like you're in a shit situation but take charge of the situation and stop relying on people who don't give a shit about you. Stop relying on a system which doesn't care about you. They've already bled you dry it doesn't matter what happens to you next.
At this point it seems like you're fucked. Might as well bite the bullet and sue the fuckers for all they are worth. You might be able to get enough out of them to live with whatever your disability brings. Seek legal counsel, document everything and if that won't work for whatever reason then kill as many of those ophthalmologists as possible before an heroing.
Anyways, I wish you luck.
Anthony Gonzalez
He actually fell for the STEM meme.
Literally laughing. Enjoy it
Jordan Ramirez
Shut the fuck up, imbecile. What shade of shit brown is your skin?
Jacob Walker
Posted last message before reading final parts. Unbelievable. I’m sorry to hear all of that, user.
Charles Reyes
Doctors are pretty useless user. I saw 4 telling them I had a sinus infection but they didnt believe. "Symptoms arent typical for a sinus infection... are you sleeping in a weird position? dental issues? jaw issues? eye doctor?" They only believed it after doing a Cat scan for $4k and then saying oh yeah, you do have inflamed sinuses, looks like a sinus infection we'll give you stronger anitbiotics now. I was in pain almost everyday for weeks. I think they're so used to seeing patients who arent actually sick and miraculously get better on any prescription that they arent used to actually diagnosing or treating people.
Jaxson Long
Op you might have lupus
Joseph Bell
Honestly sad story, but why the fuck are you blogging about it on biz of all places? Go see a therapist dude, you need to talk to someone and this isn't the place. There are people who do this for a living and can help you. Best of luck bro
Ethan Anderson
what's your problem? I'm giving him actual advice. Also I'm white.
Andrew Barnes
Should he align his chackrams too? Maybe a little crystal energy? How the fuck does drinking soymilk cure a genetic disorder? The absolute state of education in Burgerland
Aaron Turner
Yes the protein his body evolved to eat and has been eating his whole life is now, out of nowhere, somehow degenerating his retinas and destroy his central nervous system.
You're fucking retarded
Ryan Murphy
sorry to hear about your misfortune, this is the wrong board for your situation.
He clearly said it's not genetic. Also he should avoid soy.
The food you put in your body literally IS your health. If you don't fix the cause, you'll never fix it. You'll only put a bandage on it.
Austin Peterson
No its not actual advice, you utter faggot. It's your stupid fucking schizophrenic conspiracy theory rambling. Shut the fuck up. Shut the fuck up.
Eli Rogers
Non ironically try reddits r/legaladvice
Aiden Phillips
Im guessing you are a burger. You should take the burger route and sue the doctors that messed up. But then you probably signed some clausule that they are not responsible for their actions since youre poor.
Jason Allen
The absolute of our healthcare system. I’m truly sorry you have to go through something like this OP. The only advise I have is to be more assertive when trying to get ahold of people. Calll multiple times in a row, demand to wait on the phone for someone to take your call rather than leaving a message, etc.. best of luck OP.
Jacob Reyes
Lmao
Connor Collins
nice denial. Enjoying your monster energy, sugar foods and soy-fedd eggs? > literal state of Jow Forums
Jason Ross
yeah but other stuff can cause problems, not just food homie
a better diet doesn't fix a broken leg
don't do this I pretend I'm a lawyer there all the time and I don't know shit about the law
Sebastian Kelly
Promoting suicide to a guy willing to live is a dick move. You're a retard. Medicine(real medicine, that when possible fixes the cause) works for a reason. The scientific method is your best bet at proving efficacy. Millions of dollars and workhours of research go into it. Please tie 2 nooks and hang with your blogspotter physician, it'll only speed up your process.
Bentley Collins
A variant in RP25 + autoimmune susceptibility isn't compelling to you? Ah right. Ok. I guess OP should give themselves coffee enemas then. OP needs to talk to an outside source, present all the facts and genetic testing, and get their anxiety under control. Not eat more salads.
Christian Garcia
We told you to shut the fuck up, retard. You are a deluded new-age pseudoscience spewing dipshit. How fucking dare you throw out your insane little tidbits as "wisdom" to somebody who may actually be fucking dying.
Go dilute lead in water and take a sip. I call it the homeopathic suicide by gun.
Austin Thomas
Okay. I said that he uses an App called "Ada" which is sponsored by the European Healthcare, and uses Artificial Intelligence to find out which autoimmune disease he has. That way, he can follow whatever the doctors will tell him to and fix it with medicine.
But still - I recommend him fixing his diet if he wants to improve his long-term health.
If that's what you call suicide-advice, okay my friend.
Aiden White
Fun fact: You'd die from water poisoning long(and I mean loooooong) before lead poisoning if you tried to off yourself on homeopathic medicine based on lead.
Jack Moore
It's actually amazing to me how fucking deluded you are. Your advice was for op to self diagnose with a fucking APP and to stop eating dairy since it "causes diseases".
You are peasant-tier stupid.
Brandon Gonzalez
Homoeopathic shit is bullshit. I never said anything about that.
Bentley Foster
Jesus christ op
Christopher Gutierrez
not to be a dick but I would honestly suggest taking this to reddit, you'll get actual advice and support
you're just going to get trolled here
Nolan Hughes
Ok, Ada would be a good first pass step, looked it up. But OP is already seeing specialists, who have literally devoted their entire lives to one slice of knowledge. Some will be good, some bad. But a generalist app written by Ranjesh is no substitute, especially with genetics and comorbidities in play
Robert Russell
Nice app. I wonder why the professionals devoting their whole youth studying an insanely specific subject haven't thought of consulting that(if it works, chances are they did). If you self diagnose with a serious problem you're going to die.
Dylan Torres
I found the problem OP all your doctors were a SHE
whatever man. you probably have a shitty diet, otherwise you wouldn't have been triggered by me saying him to "fix his diet". You probably think that a pill can cure obesity, right? Or that red meat doesn't cause cancer even if proven by 79+ studies?
Isaiah Anderson
nice blog fag I'm not reading all that shit
Chase Hughes
Shut the fuck up cunt. You promote shit just as stupid as that.
>huurrdurrrr stop eating the eggs ur degenerative autoimmune disease will clear roight up!
Fucking kill yourself.
Charles Roberts
We're on the same wavelength, user. Do what this ID said OP. Organize a file folder filled with documents and results, annotate it. Write up a time line. Share it with an outsider specialist. Don't complain about the others or unfortunately, the cynical thing to think is that you're shopping for a diagnosis. Provide evidence like Sherlock Holmes.
Michael Ramirez
Reals, not feels, OP. You'll make it.
Alexander King
Didn't read all that shit but the gist I get from it was that you went to a whole series of roastie doctors and it didn't go so well.
"Eggwhites contain lysozymes which in and of themselves are not dangerous because our bodies make them. BUT in our digestive system they can attract gut bacteria like e coli and carry it across our impaired gut membranes into our blood stream, potentially setting off a reaction. People with autoimmune disease need to keep their inflammation down therefore eggs should be avoided, even if there is no history of egg allergy."
Lucas Carter
Leaky gut syndrome? Lmfao. Now I know you're trollando. Pro Jimmy rustlin
Easton Young
>Associations between red meat and CRC were weak to nonexistent.
> Proponents claim that a "leaky gut" causes chronic inflammation throughout the body that results in a wide range of conditions, including chronic fatigue syndrome, rheumatoid arthritis, lupus, migraines, multiple sclerosis, and autism.
>Autism
Matthew Torres
>Source needed No, the blog articles and a forum discussion with no source at all in them are not a valid source. You pretty much proved your stupidity by thinking they are. Hopefully OP sees this.
Grayson Stewart
OP already saw a billion specialists, who cares about some off-color diet advice. It's not going to make it worse if specialists are still in the picture, is it.
Easton Gray
I forgot to mention, the best part was that I flew across the country to get tested for anti retinal antibody testing because ophthalmologist #5 didn't believe in the methodology of the lab that everyone uses to diagnose AIR. So then I get to Washington DC and find out that they just ship samples to the same lab that everyone else does, which is less than a day's drive from my house.
So when I heard that the genetic testing results were definitively negative, I asked them to clarify what the ARA results were. It turns out that they never ran the ARA lab at all, even though I triple-checked that they were and they lied to my face about it. Their justification was that "it wouldn't have been that informative anyway."
It's an autoimmune condition which means that it flares up whenever I'm subjected to any sort of stress, so long as it's not properly treated. I've had to turn down several job offers because the interviews made it flare up too much.
I don't even know, I just need to rant I guess.
Thanks user.
I don't know how I'm supposed to support myself or pick up the pieces of my life, financially speaking.
I don't know if I can sue them though, because these are all really senior MD-PhDs, even if they have unscientific opinions about AIR. I think I may have fallen into a political faction of ophthalmology that disagrees with the standard of care for this disease. I don't even know how I would escape ophthalmologist #5's sphere of influence to get a real second opinion.
Also to everyone else arguing about food: I don't really buy the whole leaky gut/diet angle, but I have unironically noticed a correlation between the flashing lights and dairy consumption. Plus I'm really allergic soy anyway so that's not a part of my diet.
Jonathan Davis
OP just wrote a manifesto on a Uyghur catfish husbandry forum. What they need to do is cut out the rambling feelings of frustration they have, make an organized timeline of symptoms, tests, and drugs, and go to someone smart and specialized
Alexander Thomas
Contact a journalist at this point, I'm sure someone would love to write an article on this. Do it when everything is settled down though.
Lincoln Martinez
Also OP, be aware this is a thing, and many people attribute it to problems or have anxiety over it. Flashing white lights that move in your vision.
That doesn't even remotely compare to what I see. Imagine the moving aurora borealis, but made of the brightest white light you've ever seen in your life. So imagine that, plus a bunch of visual snow and your peripheral vision flickering.
I sure as shit don't have an anxiety disorder.
Jace Watson
Hey OP hang in there. One thing I can tell you is that doctors don't give a shit. You are the most interested party in all of that and it looks like you diagnosed yourself somehow correctly. I don't actually recommend this but this is what I do: Whenever something is wrong I don't first go to a doctor but do my research first. From my experience I know when autoimmune disease is at play usually what doctors give you is a pack of steroids and good bye...if that. On top of that they treat you like a nuisance when you don't fit their diagnosis, because you have to fit the diagnosis or you are crazy in their eyes. So I do my research, write it down and when I go to my doctor I discuss it with them. And I mean : studies, papers, correlated symptoms and all of that shit. I don't ask for diagnosis and do not take a simple " you don't know what you are talking about " answer. For fucks sake they are taking your money they better treat you like a human being, not a garbage. After the discussion I take my time to think and research the treatment options. A few times in my life I was lucky enough to get a doctor that listened to me and actually devised a treatment that helped and not just masked symptoms. Most of times I diagnose and treat myself. A few times with a help of an offshore pharmacy where I bought my meds without prescription. I basically am at the point where I am my own physician or I wouldnt be here otherwise. I have a background in biochemistry only and I managed. I'm not super smart or special. I just want to be healthy, so I don't rely on idiots to tell me what's wrong with me. You shouldn't do what I do but you should understand that they literally don't care about your health or about you. Most of them anyway. I hope you are lucky and will find someone who will listen and help you, if not then you already have the diagnosis. All its left is to figure out the treatment.
Henry King
I didn't read your whole post, OP, but I can only assume that being rich would help. You have 9:56 to DYOR and FOMO in before it's too late.
This is not business and finance related. Still I'm a med student so I will say: document everything with proofs then go see a lawyer to sue them. Judiciarization of care is annoying but some doctors deserve it.
Also love your mom, it's probably even more stressful for her than for you.
Chase Jones
Can someone post an actual tl;dr of that massive essay?
John Richardson
T. Brainlet that believes that pseudoscience that the FDA and AMA spew out.
I bet you are a fedora wearing "skeptic"
Julian Sanders
Leaky gut is scientifically accurate though.
Do your own research.
Lucas James
ops mad that drs are fallible and is going to sue them to force them to change professions.
Nathaniel Russell
Doctors have a fucking government monopoly and this is why they are corrupt shitbags.
We need a free market in healthcare. We need real innovation.
good luck having a free market when some random shit can sue you for literally every dollar ever because he doesnt like your opinion
Jaxson Wilson
That's not a free market
Julian Garcia
better get to work on making the average person not a little shit then
Anthony Rodriguez
When did anyone won because they didn't like the doctor's opinion? That's just not true. People win lawsuits when there is a proof that the doctor did harm, not gave an opinion. Also, these opinions are called diagnosis and doctors are usually super angry of a normal person dares to disagree with it and are ready to drop the patient just for that. So are these just opinions if you are not willing to discuss it and betting a health of another person on it?
Jose Campbell
Also this
Andrew Nelson
Wish I could help you OP, I'm so sorry. Been going through a similar spiel with doctors about my own health problem and it's the most infuriating, pointless bullshit ever. I guess just know that there are other people who know what it's like and we're rooting for you. May you fully recover and hit every moonshot this year, bro.
Camden Ward
you dont need to win anything. 90% of malpractice suits are settled. 90% of those cases are handled without the dr even being present.
Charles Gray
Hi user, I’m a cardiology reg so can’t really help much with the nitty gritty stuff. Sorry to hear what you’ve had to go through. Do you mind me asking where you’re living?
Also, you mentioned you were on cel eoy/ mycophenolic acid, and then said methroxate. I know both are immunosuppressive/ chemo tx but the methroxate is much less selective towards lymphocytes (your own bodies cells, which are miatakingly attacking the receptors in your eye, or the nerve itself.) meaning that it would be destroying all other cells. This would make you feel pretty bad, vomit, diarrorhea etc, so hope you’re doing ok there. the fact that you’re getting tingling/ pain along your left legs, along with the diagnosis of RP, means there may be something else. You absolutely need to go to a neurologist. Primary points of nerve pain are hypersensitized nociception (by inflammatory mediators) or an interruption in the actual nerve transmission; usually due to your own cells attacking the post synaptic receptors. This is where ACh normally binds to transmit/ Propagate the signal. You could also have excessive clearance of ACh by the AChesterases. Do you have any notable muscle weakness recently? Could ask your doctor about edrophonium; it won’t help regress the disorder, but may allow for better function if there’s a loss.
Honestly this is awful and you’re right to absolutely be taking it all into account. My advice atm would be to go get a copy of all your records, all results, and go book an appointment with a private neurologist. It does sound autoimmmune though, which if it’s chronic, ducking sucks and isn’t really a curr atm, they can only treat the symptoms as far as I’m aware. Cardiologist here though, so idk. I haven’t looked at the eye in a few years at this stage, but The autoimmune issues still stand. V curious about the two chemo agents you mentioned
Camden Jones
You’re a complete handicap. Don’t dare give advice like that. All you holistic fags see the word autoimmune and think it’s to do with inflammation caused by milk or bread or some shit. OP is on an immunosupresssive course, which is the same chemo agents used in cancer tx at milder levels. Last thing he needs joe isn’t to skimp our on diet. Jesus. Honestly some people shouldn’t be allowed to make decisions for themselves.
Elijah Martin
What else are you doing with your life other than focusing on your illness and spending money on doctors?
Yes, doctors suck. No, you are probably not going to lose your vision. Your anxiety about the condition is doing more damage than the illness itself.
Jackson Diaz
Bio fag here. Why does it seem like there’s so many people with autoimmune disorders now days? This shit is pretty rare and I keep reading shit everywhere where people claim to have it. I’ve met people claiming to have it too. Seems bullshitty to me. Anyway if true then good luck becaue most of those are currently untreatable
Jason Miller
They were ruling out all the other things. Common things are common. You didn’t have common symptoms for a common disorder, so they went to rule out any possible trigeminal issues I’d imagine. Your upper teeth nerves cross over to the bottom of the maxillary sinuses, so they were checking that first. It presents as the same sinus pain. Jesus man, I forgot why I need crypto. I hate the majority of patients because they’re fucking idiots lol. Moving into clinical research the minute this ends.
Also lol at having to go to a doctor to treat s fucking sinus infection you absolute millennial baby. Take a few NSAIDS and move on with your life like everyone else lol.
Landon Gray
Holy fuck what the fuck is wrong about the burger healthcare systrm. I'm a medfag and this screams incompetence so much. In France you'd wouldn't have had to go through so much trouble. This sounds autoimmune, go see a neurologist asap with every data about your medical history. How old are you? Auto immune diseases appear in your 20s, and the fact that you are allergic to a lot of things indicates that you are predisposed to auto immune diseases. Good luck
Ethan Edwards
There is a substantial increase of people with auto immune disorders for whatever reason, atleast where I live in France that's the case
Juan Gonzalez
> can carry > impaired hit membrane
Op has never mentioned former GIT Issues, no family hx of GI disorders, if he had autoimmune ones, no doubt we would have heard of the crohns/ IBD by now. Hasn’t mentioned he’s on PPIs or H2 antagonists like cinetidine, ranitidine, etc.
He doesn’t have gastric issues, and what you’re saying is that some shitty lysozymes are gonna degrade the mucosa and submucosa and epithelium of the stomach/ duodenum? That’s H. Pylori that does that, and it’s super unique in its function.
You read a fucking blog and eat moderately well, and probabaly have never been sick. > Hurd sure egg whites will rip your gastric lining apart and then become bacterimic/ Viremic, survive the bloodstream, cross the BBB and be super selective for your optic nerve.
Kill yourself faggot. Christ almighty the world needs a straight up cleanse
Mason Mitchell
Hey OP this is the answer:
you need a free market. so incompetent doctors can't just sit in place.
So where is the freest market in the world? Thailand. They are famous for medical tourism, doctors speak English, and affordable. Maybe you can find a competent doctor there?
Sebastian Turner
Damn user. Just roasted the fuck out of that other dude. I’m glad to see a non retard posting here who actually understands biology/medicine
Josiah Reed
I'm in the northwestern US. I'm only on 15mg/once a week oral methotrexate, so far the worst side effect I've had is some mild hair shedding. I'm still seeing the same neurologist who is supposed to do an EMG next week, but everything is progressing at a snail's pace.
>I know both are immunosuppressive/ chemo tx but the methroxate is much less selective towards lymphocytes I've noticed this as well. Both the methotrexate and prednisone are supposed to be more broadly acting, and both seemed to have more of an effect on my symptoms than the mycophenolate mofetil. I don't understand pharmacology well enough to know what prednisone and methotrexate are both acting on that mycophenolate isn't though. Would you happen to know any more about that?
I only had one brief episode of muscle weakness in my left leg last year, but for the most part I've been having electric shock sensations and persistent involuntary twitching. My pointer finger and thumb were waggling back and forth almost constantly for most January. I also have a tremor.
Also relating to cardiology, I've been having some occasional chest pain and heart palpitations. People have been saying I'm stressing out about this too much, so I figured it was unrelated, but now I'm not so sure. The heart palpitations got pretty bad when I wasn't feeling well in December/January.
I'm 23, but this also happens to be the age that a lot of people are diagnosed with RP.
Parker Anderson
doesn't matter if you're a burger or not - sue them for money, lots of it ... don't get shaken out, make it your mission
Wel methroxate basically interferes with folate conversion. It inhibits it’s conversion to the tetrafolate as methroxate binds the enzyme (dihydrofokate reduxtase). This basically results in an ability to make some of the nucleosides used in DNA synthesis; means no more new cells. Broad acting as we said.
The mycophenolic acid works differently. It pretty much stops purine synthesis by binding to IMP dehydrogenase. Lymphocytes (your bodies good cells) are mainly synthesized using purines.
Prednisone is just a synthetic glucocorticoid; used commonly in trx for autoimmune and inflammatory disorders. Aiming to attack the symptoms with this.
It is odd though that the broad IS med is working better then the lymphocyte selective IS med. Finger and thumb are supplies via median nerve; wouldn’t worry about that. Chest pain? Naturally you’ve every right to be having a heavy chest with all the anxiety etc going on. I wouldn’t see a definitive need to see a cardiologist, but if you want to go for it. Sorry I can’t offer more advice. I’m not a neurologist sadly. Hope it works out for you user. Murcia has good doctors despite the abusive system.
Isaac Cook
Thanks user, I really appreciate it. Also would you happen to know if purine inhibitors affect eosinophil production too, or is it just lymphocytes?
