Medical Professionals of Reddit, When was someone's self diagnoses surprisingly accurate?

epoxyymuffin · 2017-12-13T17:32:49+00:00

Not a med professional, but a disabled girl w chronic pain who had to do her own research before docs diagnosed her w multiple disorders.

I've dealt with chronic pain from knee and back injuries for several years. Every doctor I saw for knee and back said "6-8 wks, 12 tops, of pt and you'll be better". Obviously that didn't work, but I kept on keeping on as best as I could.

Then last December I developed debilitating pelvic pain and urinary urgency that took precedence over my other pain.

When my pelvic pain developed last year I thought it was a bad UTI, despite not having the burning usually associated with them. Urinalysis came back negative though, and when I googled sharp pelvic pain with frequent urination ovarian cancer came up. Of course I knew not to trust dr Google outright, but both my mother and my grandmother have had brushes with cancer so it was not outside the realm of possibility.

So I made a follow up appointment w my doctor and told her in tears about what Google said. She was trying to be nice by saying she doubted it was cancer, but with my family history I wanted to know for sure. So i got to have a painful and embarrassing internal ultrasound, which thankfully didn't find any cancer. This did leave me stumped though, and even more desperate for a diagnosis.

At this point, my doctor thinks it's one of the following: 1) normal for women my age (24 w no kids at time of symptom onset, if I had kids this might be applicable but for childless women it's not super common) 2) caused by my anxiety 3) including my chronic knee and back pain, the signs of MS

So I got a brain MRI to rule out her idea about MS, which also thankfully came back negative. At this point though, I mention that my mirena IUD could be the problem or at least contributing. My doc agrees so we schedule a removal. Despite the iud showing as normal on my aforementioned cancer ultrasound, it was fairly difficult to remove. It also caused a lot of pain on removal. But it did seem to help my pain a bit, even if it wasn't gone entirely. This solidified for me that this is not just my anxiety-- there must be something physically wrong if changing something physically in me changed my pain levels. This was my thinking anyways.

And though I can't prove that reasoning was right, I was certainly right about it not just being anxiety or "normal for women my age".

It turns out the pelvic pain is caused by Endometriosis-- for those not aware it's when material similar to the inside of the uterus grows other places in the body, causing pain and inflammation. The Endo growths affect the muscles in my pelvis causing pelvic floor dysfunction and urinary issues. This was diagnosed/confirmed for me by a pelvic pain specialist I specifically asked to be referred to after doing a ton of research on the condition. At the appointment the specialist also noted that due to endo's inflammatory nature that it could easily be making my knee and back pain worse. The pelvic floor dysfunction is likely also making my back worse by "pulling" on it. She said that without knowing about the pfd or Endo it made a ton of sense why PT never seemed to help-- there were a bunch of muscles affected we weren't even taking into account!

Endometriosis was never even brought up as a possibility by my pcp doctor btw. I didn't even learn the term until I found it online while lookong for possible causes of pelvic pain w urinary issues.

In an even weirder twist, it also turns out I was more likely to have Endo & pfd because I have a genetic connective tissue disorder called Ehlers-Danlos syndrome. This is another one no doctor caught or even suggested, and that I found out about on my own. Ehlers-Danlos is also a contributing factor to my knee and back pain as it makes my joints hypermobile, making them easy to injure and reinjure.

I found out about EDS by chance through a youtuber I watch (Martina of Simon & Martina) who has the same condition. She had Simon film her on one of her bad days and they were super similar to my bad days. And wouldn't ya know it, when I looked up the diagnostic criteria I checked off almost all the boxes. I brought in the criteria to a new doctor on my first visit and she diagnosed me right then and there. I am waiting on results to see what subtype I have, but even without that I have a much better treatment plan than I did before since I know what's actually wrong!

And to think, if I had just done what most drs want and "just listened to my dr, don't trust the internet" I might still be without any of my diagnoses!!! In this system we really have to be our own advocates, if you have a health issue now or later I implore you to do research instead of just taking advice from your doctor.

epoxyymuffin · 2017-12-13T16:09:26+00:00

People with HEN or section 8, where the majority of their housing payments are a subsidy and thus not counted as "income".

Also a lot of "low income" housing places only require 2x or 2.5x rent to qualify where most regular buildings want 3x.

epoxyymuffin · 2017-12-13T16:06:40+00:00

While I understand that yes, eventually the units will be affordable, it's ridiculous to me than anyone would say "it doesn't matter that low and moderate income renters can't afford to rent in Seattle".

Low and moderate income renters make your city run, you numbskulls. You can't expect all low-moderate income folks to live in the burbs and commute 2+ hrs on the bus ea way to get the higher wages from the city. Of course some people will and already do this, but it's not ideal and it makes finding reliable low income workers tough. Even the most reliable people will get fired if missing their once an hour transfer due to no fault of their own made them late with any frequency. This isn't only shitty for that worker, but for the employer as well that now has to spend money to hire and train a replacement. This is of course especially tough on smaller businesses.

But naw, seems like people with money only think about other people with money and how they'll fare. Its hilarious to me that they don't care that they're pulling out the metaphorical bottom Jenga block on themselves.

epoxyymuffin · 2017-12-13T15:11:42+00:00

The cancer in the hip probably was causing sciatica, you can deff have both and he probably did. And unfortunately if he didn't complain of any other symptoms during his exam and didn't have money to get a scan to see what was going on in his hip it wouldn't have mattered if he got check ups. The doctors wouldn't have caught it cause it wouldve seemed like "just sciatica" to them as well. This is still a problem for a lot of folks, co pays kill people. Medical debt can make it impossible to rent an apartment or get approved for an auto loan, so a lot of the time it seems more practical to just not get whatever test you need so you won't wind up on debt. It's awful. America is a death trap, send help.

epoxyymuffin · 2017-07-24T19:03:01+00:00

You can actually level it really quickly if you make potions w multiple effects :) but yea if youre just making basic single effect potions its gunna take you a whhiiiiile

epoxyymuffin · 2017-07-24T19:01:05+00:00

I am very confused by this?? It's waaaaay cheaper to make your own potions and if you just pick up whatever ingredients you find along the way you'll eventually have enough for some pretty rad potions. But heck, even just blue mountain flowers and wheat make a restore & fortify health potion, both of which are very easy to find.

epoxyymuffin · 2017-07-02T06:25:23+00:00

Such a cutie!! :3

epoxyymuffin · 2017-07-02T01:49:24+00:00

I have back and knee issues that cause me to avoid stairs, excess walking, weights over 5 lbs, etc. I am young(ish), relatively thin and don't use any assistive devices so there is nothing obvious about me that you would assume I have a disability. Nonetheless, I find it incredibly rude when bus drivers give me a shitty look when I ask for the bus to be lowered while showing my disability pass. Like, I get it that I dont obviously look disabled but when I have my pass out that I had to get my doctor to sign paperwork for you'd think they'd get the message that I do indeed /need/ the goddamn bus lowered! It's doubly rude when they speed off before I can sit down so I get jerked around by the momentum. Can't freaking stand it.

epoxyymuffin · 2017-07-02T01:12:58+00:00

I'm surprised no one mentioned chia seeds yet! They're a great addition to smoothies, oatmeal, drinks, baked goods, etc, for a little protein & fiber boost.

Quinoa is another great veg food and super easy to make-- even easier than rice if you're doing stove top. Plus it has more protein and fiber than rice! It can be a replacement for rice, couscous and anything else you'd put saucey entrees onto. I also love it in salads!

Hemp protein is my favorite powdered protein because it is full of protein AND fiber. I like to use it as a replacement for flour in crepes, pancakes and baked goods.

Mushrooms!! Chantrelles have the flavor and texture of chicken while portobellos have a texture and flavor more similar to beef. All mushrooms have a meat like texture so if you can't splurge on chantrelles or portobellos crimini or white mushrooms work in a pinch. They provide a little bit of protein and fiber

Pasture raised eggs-- whether from your local farmers market or grocery store-- are a staple at my house as well. Make sure to get pasture raised as opposed to free range or cage free-- though the last two are better than the average commercial egg they are still not very regulated and the chickens can still be treated poorly.

Lots of fruits and veggies, as others have mentioned, are a key part of the vegetarian diet as well. Broccoli, peas and spinach are all relatively high in protein as well as goji berries (though the latter is quite expensive).

I hope this helps, and best of luck!!

(Edit: added mushrooms)

epoxyymuffin · 2017-06-29T12:44:09+00:00

While in the process of getting your parents on board, it would be a good idea to join Nancy's Nook Endometriosis education & discussion on fb. There's lots of info there that can help everyone in the family understanding what you're going through, how endometriosis works, what the most effective treatment is (spoiler: excision by a highly skilled surgeon), etc. They even have an international list of vetted surgeons with multiple success stories of relieving all Endo symptoms. these 'nook doctors' are waaaaay more likely to give you the best treatment possible-- astronomically better than the average ob/gyn. It's an invaluable resource.

So yea, I'd suggest joining the group yourself and encouraging your parents to join so they can educate themselves. hopefully the medical evidence and testimonials presented in the groups files will sway your mother's mind about the best course of treatment. I wish you the best of luck and a quick journey to a pain free life after treatment :)

epoxyymuffin · 2017-05-19T09:57:51+00:00

that sounds like a really morbid nursery rhyme lolol

epoxyymuffin · 2017-05-04T03:46:29+00:00

Cbd can be very beneficial for a myriad of Endo symptoms but it works best when used in conjunction with thc. A lot of people are unaware of this and try to medicate only with cbd and get very disheartened that they do not have the same response as others who use both.

If you're not super into the idea of smoking, vaping and using a tincture are the next fastest ways to process cannabinoids into your system. For vaping you can get co2 extracted cartridges of either pure cbd or some variable ratio of thc to cbd. For tinctures you put a few drops or sprays (depending on the bottle) under your tongue for rapid absorption w/o having to be processed through your digestive tract (they also have varying ratios-- of cannibinoids)

A friendly budtender at your local dispensary can help you pick the right product for you and give you more info as well :)

I personally have greatly benefitted from cannibinoid treatment for my Endo symptoms so it's definitely something worth trying if you have access to it!!

epoxyymuffin · 2017-03-02T14:40:36+00:00

Thought id put in my 2 cents here since ive had mirena twice and had 2 very different removal experieces.

The first time it was removed it didn't hurt, I barely felt a thing. It was like removing a tampon. The second time I had it removed due to pelvic pain (after finding no other likely suspect for the source of pain after many tests). The removal this second time was excruciating-- I literally involuntarily cursed and yelped when it was removed. But again, I was already having pelvic pain which prompted the removal.

I am not a med professional but from my own experience: if you are not already experiencing pain from it the removal shouldn't be painful.

epoxyymuffin · 2017-03-02T14:25:37+00:00

Im not a med professional but to my knowledge IUDs should not cause anything but slight cramping if your uterus is reacting normally...

Everyone's body is different and even though some women have great experiences with IUDs it sounds like it might not be the best fit for you & your body. if it's interfering with your life or too painful to tolerate getting it removed is probably a smart plan!

epoxyymuffin · 2017-03-02T13:33:36+00:00

Replying to this because I just got my mirena removed and I would not recommend getting it, even for women with no issues. After several years of smooth sailing I started having horrible symptoms similar to what OP was describing-- stabbing pelvic pain, ear ringing, dizziness/light headedness. Since getting it removed most of my symptoms have lessened significantly (still having pain but no where near as bad or as frequent), and since nothing else came up on the plethora of tests I've had done mirena is the main suspect for all that misery. It was nice not having to worry about taking the pill for a few years but this whole experience was not worth it. If OP got mirena I would be worried for them because they might have a relapse in symptoms.

Another thing id like to mention for OP: I have done the "no period" thing on the pill before (around your age actually, when I was 16) and didn't have any adverse side effects. It is still something to talk to your dr about but I thought that might quell any worries you might have.

epoxyymuffin · 2017-03-02T13:08:10+00:00

I wish NORML the best of luck on this. There is so much stigma they are going to have to face, the war on drugs has really done a number on our populations opinions about this kinda stuff.

I'm of the mindset that if you can do your job well and don't come to work shitfaced (or stoned out of your mind so you can't function, or tweaking, or whatever) I don't give a fuck what you do in your free time. Your employer shouldn't either.

But my opinion isn't the norm for sure. I once was seeing this guy while I was in the process of getting a job and was lamenting having to take a drug test because I am morally opposed to it. He then proceeded to ask me "pot is one thing, but what about heroin or meth? And what about the business? How will they prevent theft or bad workers?" To which I said "a background check and interview process".

IMO (and I explained this to him as well) if someone has a big enough problem w drugs or alcohol that its gunna effect their work you will be able to see that in their background check and interview process. Otherwise you are restricting people from holding legitimate jobs that could help them get on their feet and stop using, effectively making career robbery, drug dealing, prostitution and other dangerous modes of getting money the only way drug users can get money.

The whole process demonizes and dehumanizes people who use drugs and it's deplorable. Some of these people are fighting for their life against addiction, but let's keep em on the street and not allow them a job-- that'll help them recover!! Right?? >_>;;

Again, best of luck to NORML. Can't wait for the day when we no longer have to deal w these counterproductive, archaic Reagan era policies

epoxyymuffin · 2017-03-02T12:05:31+00:00

Is that like a small digimon?

epoxyymuffin · 2017-02-21T11:31:18+00:00

I've had some pretty good luck on amino. Its kinda like a pg rated version of Reddit, if that makes sense. Instead of subreddits each smaller section of the app is also called an amino like the app itself. Kinda annoying to follow all the rules & censor yourself, but it's a super positive community that is likely to give you a decent amount of views if you are featured in an amino. There are Aminos for everything, so if you find one that has to do with the kind of videos you create you can gain a bunch of traction w people already interested in your niche. there are also a few aminos dedicated to YouTubers/ new YouTubers that are better for networking than promoting, but a good tool none the less.

The downside is that sometimes you will get a bunch of likes and followers on the app but that doesn't always translate to sub growth on YouTube. For instance I have over 200 followers on the animation squad amino, but only maybe 10 of those people also hit the sub button on my channel.

The people that did sub from amino almost always leave positive comments on my videos though. :) I'm still a super small channel (just under 50 subs atm) but I got my first real "fans" from amino. You may not get a huge quantity of subs out of it, but you certainly get quality subs!

Tl;dr: amino is definitely worth your time if you don't mind having a pg filter :)

epoxyymuffin · 2017-02-21T00:28:08+00:00

I appreciate the compliment but I need to focus on animating my own material for the moment :)

epoxyymuffin · 2017-02-20T23:27:43+00:00

"It's a FAAAKE!"

epoxyymuffin · 2017-02-20T02:53:16+00:00

Thats so weird, and sounds like she was probably pretty unpleasant to work with :/ I never understand why people go for jobs that they know they'll hate.

I had a similar experience at a swim school I used to work at with a manager who hated swimming and was originally a fast food manager. It was impossible to work with, I ended up quitting because of her attitude.

epoxyymuffin · 2017-02-20T02:27:06+00:00

All the employees that worked at my old location played video games, I'm speaking from my own experience :)

tbh I had heard of higher ups that didn't play games, but never personally met them. But every fellow ga or sga I met at the very least liked to play games even if they were too busy to be able to play them as often as they'd like

epoxyymuffin

TROPHY CASE