NationStates Jolt Archive

What's the obscurest disease you've had?
Or the weirdest one to treat.

Or just any medical condition that is notable.

For me it has to be an ongoing Balance Disorder that I developed a year or so ago and has no treament options.

At the moment (the reason why I made this) I have the "Devil's Grip" (epidemic benign dry pleurisy)

It's viral, contagious, and has no treatment, but as the name says, it's benign, and not dangerous at all :)

Well... my entire life I've had a bunch of skin problems. And I don't just mean pimples. I have these weird bumps on my shoulder and WHAT THE HELL ARE THEY? Dermatologists just give me some random cream that does nothing. They don't know what they're doing, but they like to pretend...

This next thing isn't obscure, but most people wouldn't recognize it as a problem. I'm double jointed. Because of this, I fell over a lot as a kid. Also, I burn more energy in a shorter time period than most people, (because of the double jointedness) meaning I get tired a lot and people think I'm lazy. I also have sensory integration issues...

When I was a kid I had double vision. This isn't obscure either, but for some reason schools don't test for it. So, again, when I was a little kid, I couldn't read. I didn't know I had double vision... I thought everyone saw like this! I didn't see anything that indicated otherwise. One time a bunch of teachers where having a meeting about why I was such a retarded reader, and I said "well, I can read fine once the two words go together!" This could easily be misinterpreted, but luckily my mom understood me right away and took me to an eye doctor.

These aren't diseases but they are syndromes.

Goldenhar Syndrome (http://www.faces-cranio.org/Disord/Golden.htm)

and

Russell Silver Syndrome (http://www.nlm.nih.gov/medlineplus/ency/article/001209.htm)

Both pretty rare.

I don't really think I have any obscure diseases, but I was reading to my parents at 4 :)

I have Kallmann Syndrome (http://en.wikipedia.org/wiki/Kallman%27s_Syndrome). Highly and very uncommonly. It occur more on males than it does in females. It acts differently than other disorders because the conditions can vary widely but the main core symptoms is the simple fact that puberty fails to trigger in people who have it because of a missing pituatory gland, which governs hormones. In my case, when I had the test done, they found levels of testorone in my blood but no oestrogen. I have to take supplements to trigger puberty and if I don't take hormone supplements, I would have more problems.

I had no idea that double-jointed people burn energy faster, that's kinda cool. I take it you can eat just about anything you want then o_O

Willgrove.

Wow.

Both have colours in their names, they sound almost pretty, I was imagining a beautiful halfgold-halfsilver person. Although the links make it not sound as good.

Willgrove.

Wow.

Both have colours in their names, they sound almost pretty, I was imagining a beautiful halfgold-halfsilver person. Although the links make it not sound as good.

It's not, it sucks, lotsa surgery with Goldenhar, and with RSS, you're basically in pain because somewhere on your body you hurt, not to mention the high metabolism and low weight so idiots actually think you're bulimic or anorexic. And because you're small and fragile with RSS, people think they can take advantage of you or talk down to you, or treat you as inferior.

Of course they stopped treating my girlfriend like that ever since I came into her life because I basically defend and protect her from the idiots and asshole that this world has to offer.

I had no idea that double-jointed people burn energy faster, that's kinda cool. I take it you can eat just about anything you want then o_ONot really, my metabolism sucks. It's hard for double jointed people to become athletic.

According to wikipeida, double jointed people also get these other things.
1. Gastroesophageal Reflux Disease (GERD)
2. Irritable Bowel Syndrome (IBS)
3. Varicose Veins
4. Flat feet, pronated feet, plantar fasciitis or sesamoiditis and unsupportive shoes
5. Idiopathic scoliosis
6. Joint instability causing frequent sprains, tendinitis, or bursitis when doing activities that would not affect the normal individual.
7. Early-onset osteoarthritis
8. There is evidence linking hypermobility syndrome to anxiety and depression. [2][3]
9. Subluxations or dislocations, especially in the shoulder.
10. Knee pain
11. Back pain, prolapsed discs or spondylolisthesis
12. Hernias
13. Bruising easily
14. Worsening of symptoms in cold weather
15. Joints that make clicking noises
16. Headaches
17. Susceptibility to whiplash
18. Temperomandibular Joint Syndrome also known as TMJ
19. Increased nerve compression disorders (i.e. carpal tunnel syndrome)
20. Mitral valve prolapse
21. Uterine prolapse
22. Flu [Formal Larinal Usekretinals]

I've got 6, 8, 10, 11, 13, 14, 15, 16, 17, 18, and 22. Wow.... I didn't even know those things could be blamed on double jointedness until now. I thought I was just sensitive.

Ooooo a thread where I can be a hypochondriac. How fun!

Okay, my hips kinda rotate outwards which means I walk funny, I have somewhat of a hunchback and I suffer from occasional migraines that send me temporarily blind (well, sort of...). Oh, and I have a weird condition called "visual snow" that is connected with that, where it seems like i can see individual air molecules (edit - before anyone attempts to be a smartarse and call me on that one...it merely gives the illusion of such)...or it's kinda more like static...i didnt realise it was actually unusual and I apparently see things differently to everyone else till a little while ago. And one of my eyes is slightly bigger than the other (Anisocoria or something..).


Um, that's all I think.

Acute viral nasopharyngitis

Ooooo a thread where I can be a hypochondriac. How fun!

Okay, my hips kinda rotate outwards which means I walk funny, I have somewhat of a hunchback and I suffer from occasional migraines that send me temporarily blind (well, sort of...). Oh, and I have a weird condition called "visual snow" that is connected with that, where it seems like i can see individual air molecules...or it's kinda more like static...i didnt realise it was actually unusual and I apparently see things differently to everyone else till a little while ago. And one of my eyes is slightly bigger than the other (Anisocoria or something..).
Haven't seen you in a while...

And you guys sound interesting...

Haven't seen you in a while...


And you are...? ;)

I had a chronically subluxing patella (that is, my kneecap was prone to dislocating frequently). But surgery corrected that. I also have polycystic ovary syndrome (also known as Stein-Leventhal syndrome or PCOS), but there isn't much to do for that, and really nothing needs to be done for the most part. Fortunately, I don't seem have any of the unpleasant side effects like acne or diabetes. And PCOS is not that uncommon, it may affect as many as 1 in 10 women.

Other than that? Well, I am allergic to allergy medication. But not, thank goodness, to poison ivy. I can walk through poison ivy and not be affected at all.

Oh, and I am left handed, or as my father used to say "wrong handed". He claimed it was a disease... but fortunately he was just kidding.

I suffer from Graphic Dermatitis and Osgood-Slaughter Syndrome. Both sound awful but are, in fact, utterly benign.

I suffer from Graphic Dermatitis...
Dermatographism? Can we write on you? (you allergic to something else?)

And you are...? ;)
Brutland and Norden.

Other than that? Well, I am allergic to allergy medication. But not, thank goodness, to poison ivy. I can walk through poison ivy and not be affected at all.
Ooooh. Which allergy medication are you allergic to?

Dermatographism? Can we write on you? (you allergic to something else?)

Yes, you can write on me. I've heard the word order switched around so much that I honestly can't ever remember the name. It isn't as bad as it used to be, thanks to the wonder of Claritin, but it was a right pain when I was 13 and the symptoms first emerged.

So far as alergists can tell, my only other allergies are Sulfa Medication, Alchohol, and Dust Mites.

My grandmother has Charles Bonnet (http://en.wikipedia.org/wiki/Charles_Bonnet_Syndrome) syndrome...which is weird.

Ooooh. Which allergy medication are you allergic to?

Antihistamines.

I think fatal insomnia (http://en.wikipedia.org/wiki/Fatal_familial_insomnia) just about takes the cake for extremely obscure and extremely horrible.

Yes, you can write on me. I've heard the word order switched around so much that I honestly can't ever remember the name. It isn't as bad as it used to be, thanks to the wonder of Claritin, but it was a right pain when I was 13 and the symptoms first emerged.

So far as alergists can tell, my only other allergies are Sulfa Medication, Alchohol, and Dust Mites.
I take it you don't drink.

Antihistamines.
How ironic! ;)

I take it you don't drink.

No, I don't. :P

I'm curious that you recognized Dermographism. I've never met anyone else with the condition. Do you have it, or do you just have experience with it?

No, I don't. :P

I'm curious that you recognized Dermographism. I've never met anyone else with the condition. Do you have it, or do you just have experience with it?
And yay, I have company in the club of teetotallers!
*brings out balloons and juice*

I'm a medical student, and nearly flunked Immunology. Had to study hard for the finals. :p

And oh, my mother would also have these wheals after she scratches an itch.

How ironic! ;)

I know. And quite ridiculous too. And often doctors look at me funny when I tell them that. But on the up side, I don't get hayfever or anything like that, so it all sort of balances out.

I know. And quite ridiculous too. And often doctors look at me funny when I tell them that. But on the up side, I don't get hayfever or anything like that, so it all sort of balances out.
Good thing you don't need them that much... (no asthma? no other allergies esp. to food?)

Kryozerkia, how's your sense of smell? I have a friend with Kallman's. Sounds like we have some aspiring MDs in the crowd... but wait til you have to memorize all the obscure syndromes for your boards. It sucks!

Oooh, and those bumps on your upper arms to whoever asked about it- its called keratosis pilaris.


Russell Silver wasn't on there, but check out Soto syndrome or Beckwith-Weidemann for some entertainment--they featured prominently in the board exams.

But the most obscure diseases are some of the metabolic disorders. Every time I think I know them, some kid comes in with a completely new, uncharacterized one that doesn't even have a name. Sigh... How the heck do I treat this one??? I've never even *heard* of that co-factor!

I love my job!

But the most obscure diseases are some of the metabolic disorders. Every time I think I know them, some kid comes in with a completely new, uncharacterized one that doesn't even have a name. Sigh... How the heck do I treat this one??? I've never even *heard* of that co-factor!

I love my job!
Saccharopinemia? Isovaleric Acidemia? Hyperprolinemia? Smith-Magenis Syndrome? :headbang:

Saccharopinemia? Isovaleric Acidemia? Hyperprolinemia? Smith-Magenis Syndrome? :headbang:

Hang in there, it gets better after residency... I promise :D

Good thing you don't need them that much... (no asthma? no other allergies esp. to food?)

Nope, none of that. And not allergic to poison ivy, which most people are. I actually found that out by discovering that a friend and I were standing in the middle of a bush of poison ivy, and she broke out into a horrible rash while I was completely unaffected. A couple of days later she got reinfected by coming into contact with my sneakers which I had been wearing and had not bothered me at all. I do get contact dermatitis from some sort of plant (not sure exactly what and I have only gotten it twice) that causes me to break out in large blisters about the size of small grapes, which is annoying, but that only lasted for two days and then went away, and didn't itch terribly much. But that confirmed the antihistamine allergy (I was in high school at the time and had not been exposed to them much because of no allergies), because the doctor gave me a topical benadryl cream which I only applied once and it knocked me loopy for a couple of days.

I have Still's Disease. It was once a diagnosis on House. I got oddly excited by that...Rather ironic I suppose.

"Sweet! That fictional character has the same obscure disease that I do!"

http://en.wikipedia.org/wiki/Still%27s_disease

Hang in there, it gets better after residency... I promise :D
That 3.5+ more years. And from what I hear... it doesn't. :eek:

Nope, none of that. And not allergic to poison ivy, which most people are. I actually found that out by discovering that a friend and I were standing in the middle of a bush of poison ivy, and she broke out into a horrible rash while I was completely unaffected. A couple of days later she got reinfected by coming into contact with my sneakers which I had been wearing and had not bothered me at all. I do get contact dermatitis from some sort of plant (not sure exactly what and I have only gotten it twice) that causes me to break out in large blisters about the size of small grapes, which is annoying, but that only lasted for two days and then went away, and didn't itch terribly much. But that confirmed the antihistamine allergy (I was in high school at the time and had not been exposed to them much because of no allergies), because the doctor gave me a topical benadryl cream which I only applied once and it knocked me loopy for a couple of days.
Darn poison ivy. Good thing we don't have that plant here... I think...

Were you tested on whether it's really diphenhydramine (Benadryl)? 'Cause it can be the other components in the cream, not the active ingredient (diphenhydramine) itself...

Me, I thought I had allergies to crustaceans. Then I was eating Chinese dumplings for a long long time, and then I discovered it had shrimp!

is this just for physical dieseases/ problems lol if mental wahey lmao

doesnt really count (yet :S) as me but my nan/gran (and i guess i have a good chance of it now) has oesteoparosis .... basically her bones are disintergrating and she is shrinking almost before my eyes (tis the worst of the family ills im likly to get but insert the norms of diabetes in very close family)

soz couldnt find a good link as its pretty rare

This is more a biological anomaly, but what the heck? I get really bad eczema with the change of the seasons-only the first few weeks of spring and autumn-not a big deal, unless an especially harsh winter or intense summer is upon us, but I also have a bizarre body chemistry that turns all colognes into insecticide. After fifteen minutes, any scent I put on smells like Raid.

Isovaleric Acidemia?

Is that the one where they smell like... what's the English word... like that stuff from between sweaty toes?

/never did see the point in memorising those, anyway, since the memorisation is demonstrably doomed to fail.

is this just for physical dieseases/ problems lol if mental wahey lmao

doesnt really count (yet :S) as me but my nan/gran (and i guess i have a good chance of it now) has oesteoparosis .... basically her bones are disintergrating and she is shrinking almost before my eyes (tis the worst of the family ills im likly to get but insert the norms of diabetes in very close family)

soz couldnt find a good link as its pretty rare

Osteoporosis rare?

1 in 3 women and 1 in 12 men after the age of 50 were what I was taught

Stein Levanthol; Peutz-Jeghers syndrome; Charcot Joint..

Acute Giantism.......
symptoms include:
1)poor blood circulation
2)abnormal bone growth
3)being tall....

i have stretch marks on my back from when my skin couldnt keep up with the rate at wich my bones were growing. also, my legs fall asleep easily due to the circulation problems. the whole thing is no real big deal, but i like saying "dont make fun of my condition!!" when people comment on my height.

i also have an irregular heartbeat, i forget what thats called.....
static heartbeat?
its when the heart throws in an extra beat every 20 seconds or so, and has to do with random bioelectrical signals. completley harmless, but its fun to see the reactions on the cardiologist's face....

I have Gartref's Syndrome.

It's symptoms include sporadic priapism and Tourettes.

I am a musician and composer, I think that's speaks for itself.

But no, I don't have any real diseases.

That 3.5+ more years. And from what I hear... it doesn't. :eek:

Let's just say that there is something to be said for having control over your own schedule, and not pre-rounding at the crack of dawn! Maybe its the health dose of learned helplessness that I accrued along with the medical knowledge, but I'm a fellow now, and I would say that life is really good!

PS: maple syrup urine disease is another fun one... but I ask you, who was going around sniffing kids urine to figure out how to name this one?!

me and my sister both have KP which is basically just a rashlike thing of tiny little permanent bumps all over our faces, arms, stomachs etcetera. Its a very pointless dermatological thing! Never heard of anyone with that before

Frenchman's Sponge Plague. Was horrible, lasted about... oooh... 2 weeks?

Makes your face swell up a bit, prickly heat all over it. Eugh.

Kryozerkia, how's your sense of smell? I have a friend with Kallman's. Sounds like we have some aspiring MDs in the crowd... but wait til you have to memorize all the obscure syndromes for your boards. It sucks!

At first it was thought it was full-blown anosmia, but here's the thing, I have a very good sense of taste. The two are usually interconnected but this appears to be an atypical cause of anosmia. Even more strange is that in recent years I have been able to smell really strong odours; those which could be considered acidic.

Oh and on top of Kallmann, I also have hypertension (gotta love fucked up genes) and IGA. Bad eye sight, slightly limited hearing, Acid Reflux... Yeah, sucks to be me.

I have just realised that I have pretty much nothing seriously wrong with my health wise right now. Wehay?

I once suffered from constant lightheadedness for a while, but that's pretty much the only weird condition I have ever had.

I have Still's Disease. It was once a diagnosis on House. I got oddly excited by that...Rather ironic I suppose.

"Sweet! That fictional character has the same obscure disease that I do!"

http://en.wikipedia.org/wiki/Still%27s_diseaseThat's awesome, I wish I had a disease that was on house.

Elephantitus of the Testicles

http://faculty.gvsu.edu/grahamdo/images/LFimage2a.png

Darn poison ivy. Good thing we don't have that plant here... I think...

Were you tested on whether it's really diphenhydramine (Benadryl)? 'Cause it can be the other components in the cream, not the active ingredient (diphenhydramine) itself...

Me, I thought I had allergies to crustaceans. Then I was eating Chinese dumplings for a long long time, and then I discovered it had shrimp!

No, not tested... but talked with my doc about it after having the same bad reaction to a cough syrup that had an antihistamine as well, he figured that is what it was. I knew it was something along those lines from taking a cold medicine with an antihistamine and being really fidgety and itchy and uncomfortable. And technically, since the reaction was not so severe that I needed hospitalization, my doctor thought it might be classified as an "extreme sensitivity" not an allergy, but it seems to be about the same thing to me.

Basically what I got was a very extreme version of the reaction that many people get to Benadryl, with other things too... like I wanted to take my skin off because I was tingley and itchy all over. I actually scratched myself raw in spots and wasn't aware of it until the next day. I was extremely wired and completely exhausted at the same time. My muscles felt sore, and I was so uncomfortable I couldn't lie down, but so dopey I was staggering around... thank goodness I didn't have any breathing problems, but it was massively unpleasant. I couldn't sleep, and just kept fidgeting around. I remember that I sat up all night watching television, but had no clue the next day what I had watched. I was talking to people, but making no sense, and not really tracking the conversation at all. And this continued (to a lesser degree, of course) over the following two days.

The with the cream, I went to the doctor, put on the cream, then had to go to school to take a final exam in Spanish. After the test was over, and I should have aced it because I was the top student in the class, the teacher actually called my mother and said "she got a 63. Is she on drugs?" and mom said "Errr.. yes." I did get to retake the test, once we realized what the problem was.

Elephantitus of the Testicles

http://faculty.gvsu.edu/grahamdo/images/LFimage2a.png

:eek:Wow. Thanks for that image... *shudders*

Most of the things wrong with me are pretty commonplace. The rarest thing is like 1 in 133 of the general population, so pretty common. I guess the weirdest thing that happened to me was the time I got Bell's Palsy as a child, luckily I fully recovered, but half of your face shutting down sucks ass.