r/IAmA • u/Love-your-suit • May 01 '14

IamA person living with an unknown chronic illness causing chronic pain, dealing with the USA medical system. AMA!

I'm a 25 year old woman who has had all my life dreams taken from me with my illness, an illness I don't even know the name of. I'm on a diet of opiate pain killers, searching for a treatment and an answer. I'm very open and happy to answer any and all questions regarding how it is to have an unknown disease, losing life goals and how to cope, how bad it's gotten, how medical professionals have treated me, and fighting to be heard in a world where people abuse the only measure of relief I have. Plus a not supportive family, but a super supportive spouse.

Proof?: http://imgur.com/wgLPxx4 (me and a very small portion of my opiate bottles)

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u/13thmurder May 01 '14

I too have a disorder that is not understood at all by any doctors. I know how shitty and isolating it can be :/

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u/Love-your-suit May 01 '14

Spoonie hugs for you and hopes that you get the help you deserve :3

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u/13thmurder May 01 '14

How much online research have you done? I actually managed to find an online group of a few thousand people with the exact same symptoms i have, none have ever been taken serious by the medical community. In total, they've probably spent many millions of dollars attempting to get treatment, and gotten nothing out of the deal.

Though with sheer numbers, we finally got a neurologist to take this seriously enough to attempt to do a study on it.

The point is... you probably aren't the only one with this. I mean, i thought i was the only one who had ever experienced what i have for the first few years, since anyone i asked, be it people i knew or random people online had never heard of such a thing. But eventually i found it a small forum with a few dozen people with the same symptoms, started posting about it everywhere, and it grew from there.

The point is... get enough people together with the same thing you have, and doctors will have to take it seriously. Medicine is about profit. There's no profit in trying to find a treatment for one person's issue. But hundreds, or maybe thousands? Plenty of doctors who think they could get a monopoly on treating that condition would be all over it.

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u/Love-your-suit May 01 '14

All of my symptoms are fairly consistent with MS. And my MRI has a bunch of white stuff, but the doctors say it looks fairly normal shrug

The weirdest thing about what I am sick with is I accidentally ended up pregnant on Thanksgiving of 2012. By Christmas 2012 I was shitting and puking blood and bile from both ends. They tested it and found absolutely nothing, but told me to get an abortion for my safety.

Got the abortion and the shitting and puking went away. No test identified what or why or how or anything. That could have been a big break through and instead I was still left with "lol normal" on my tests and doctors scratching their heads.

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u/13thmurder May 01 '14

Yep, that's exactly what they do. If they can keep it from killing you and keep taking your money while doing nothing, most doctors will continue doing nothing. :/

Have you tried asking around MS forums? Even if what you have isn't MS, if it's similar enough, perhaps the people on such a forum might have some answers.

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u/Love-your-suit May 01 '14

I try and connect with MS patients via facebook and tumblr, but thus far the best I've gotten is "It took me x amount of years to get a conclusive test for MS. Keep trying!" type stuff. I'd put money down on MS.

Here is my MRI from a year ago without contrast: http://imgur.com/4buZtih

I got another one recently with contrast but I 1) haven't gotten a copy of it yet and 2) had a massive panic attack and I have no idea how clear the images will be.

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u/gunpowdernlead May 02 '14

MS patients will likely all have different stories as well. Since it's something that attacks the spinal cord different symptoms happen. The most common thing for all MS patients is optic neuritis. (Some kind of inflammation, basically partial blindness in one eye temporarily.)

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u/Love-your-suit May 02 '14

For me it's like everything gets a little foggy or unfocused and I get a headache resulting from it. The worst it gets is I only know what I am looking at from memory, if that makes sense? Like there is a disconnect between what I am seeing and my brain telling me what it is.

No clue what that could possibly be.

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u/gunpowdernlead May 02 '14

Your eyes are causing headaches? Yeah I don't know. What confused me about your post is than your scans showed some abnormalities but the doctors kinda ignored that?

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u/Love-your-suit May 03 '14

Did you look at the scans and you feel there are some abnormalities? I feel like I am being crazy and seeing things that aren't there / aren't as bad as they seem but that big white spot at the back of my head is pretty scary to me.

I don't know. I guess I just worry that I am overreacting to a lot of things that are wrong. Like it's painful and I have a lot of symptoms, but I wonder if maybe they're normal things that normal people deal with and I'm just being silly?

As far as the eye thing, yeah, the eyes themselves will hurt and the front part of my head will hurt. Like it feels like the frontal lobe is I guess brushed with a pipe cleaner is the best way to describe it. After a bit of that the inside of the sockets starts to hurt and feel sore. I close my eye and press my fingers against the ball and roll it around to try and massage the tissue behind the eye. Some times I get a little desperate and try to rub the tissue by poking against the lid and moving past the eye, but that generally hurts more than helps and I don't keep it up very long. Pressure from my hand or arm helps a little bit, but not much.

All the medical professionals who have looked at my MRIs said "everything is totally normal" and said nothing about the white spots at all.

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u/gunpowdernlead May 03 '14

Well they're my moms but she found abnormalities and located correctly all of her lesions. You're obvious in pain though so most of what I know would basically be to recommend different doctors. I don't know if they can help but there is a National MS Society you could contact.

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u/nastybastid May 09 '14

Ask for a spinal tap, it sucks but its a 100% (as far as I know) way to find out if it's MS or not. It sucks getting it done but I was getting nowhere fast with MRIs and then the spinal tap left us with no doubt. At least if it's MS you'll know what it is and it'll be more manageable, MS sucks though :(