Well, today was not a good day for me (Updated with good news 16.08.2018)

Communications Center Out Of Pod Experience
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Hello.

Some of you probably know me ingame as i have been playing EVE since late 2004 (or early 2004 with some trial accounts). But that’s not the point here.

This post is made because i was diagonsed with a rare disease called ‘Pyoderma gangrenosum’ on tuesday (13.02.2018) that only 1 in 1 million peoples worldwide get or around 5000-6000 peoples in the world gets / have every year (according to the known recorded history of this). And that alone is craaaaazy and freaks me out that i’m 1 of 5000-6000 every year that can get this / has it. 5000-6000 every year out of 7 billion peoples is very rare.

There is only 7 peoples with me in Norway with this disease according to a list / map i’m looking at. But i think there is more than that though. And Norway passed 5 million in population not so long time ago.

I have been dealing with this quite alot since August - September 2017 as i managed to get a little wound on my foot while working. Well, a wound i say. Everyone would probably think ‘hey, it’s just a normal wound that will heal itself within a week or so’, so it’s nothing to worry about. I was thinking that and i was going with this wound on my foot all the time while i was working 206.5 hours that month. Yes, my work contains alot of walking and that, so i did put my foot under alot of stress.

Just a week after i first saw the little wound on my foot (in August - September), the wound basicly started to go nuts and it exploded into a mess where the little wound would open itself really fast and eat the wound more open instead of healing it, like the imune defense normally would do. Even here i was thinking it’s something that’s gonna be healed by my body within a week or so.

The problem was that it wasn’t doing that AT ALL where i didn’t act fast enough to get to my doctor. So before i actually acted to get to my doctor for this, the little wound had expanded into 10 wounds (3 big ones and 7 smaller ones) on my foot within a week. Here my doctor did all she could do to try and get controll over it for about 2-3 weeks. But she didn’t manage to gain control over it where the wounds even expanded into 19 wounds in total on my foot in the meantime before she took the next step of sending me to the hospital (the amount of wounds my imune defense heals and creates is like a rollercoaster). And from here i have been in and out of the hospital for the last 3 months in total where the doctors there haven’t figured out what this is, until tuesday (13.02.2018) when i had an appointment there where they figured out the cause of my problem.

The strange thing here is that the wounds can start to heal itself just randomly and get relatively good after 2 weeks when it starts to heal like it has done 3 times by now. And then 2 days later after it looks pretty good it would turn fully around and explodes again into a mess where it rather creates more wounds and makes the current wounds much larger, like it does now. And i have alot of smaller not open wounds on both of my legs aswell that is kinda brownish in color that never goes away.

And after a bit of research on the internet, the symptoms to get the ‘Pyoderma gangrenosum’ disease is pretty much indentical to what i have experienced here. So there is no doubt that it’s that disease i have.

Here is some info about the disease: https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386

Here you can see what that disease can do to your body…

1: https://www.youtube.com/watch?v=VP8QXnsCQX0

2: https://www.youtube.com/watch?v=RiuYNWF4ggY

Be aware that some of the wounds shown in those 2 videos might be a bit uncomfortable for someone to watch. So if you are affected by watching some wounds, then i’ll recommend you to not watch those videos.

So on tuesday (13.02.2018) after i came home from the hospital, i started with a new medicine that is supposed to help with this. It’s called ‘Prednisolon’. So if the wounds on my foot haven’t shown any improvements within friday this week (16.02.2018) then i will be hospitalized.

As it’s a very rare and serious disease that i have got, it makes it both special and scary at the same time. Because if this thing gets out of control, i will be in a big pile of mess :scream:.

So my question here is, does anyone else here have experienced the same?

Yes, as it’s a very rare disease, the chance of someone here having the same is a blit slim i think. But i’m just trying to find out if someone here have had it or if someone have had anyone within the family with the same on what they have done and if they still are struggeling with that today.

So if you have anything to share about this disease, then please have a discussion here about it.

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When it comes to our health we all get nuts… hope u get well buddy.

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I hear about it for first time from you. I wish you that it will heal fast. :hugs:

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Get well soon bud, I really hope the treatment works for ya

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Good luck! Great care! And may everything work out!

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First, I wish you a speedy recovery.
As I have spent over 30+ years dealing with patients, sometimes the hardest thing in treatment is actually knowing exactly what you are treating, rather than taking an educated guess on what you think is the problem. While doubtful that they have erred, a local hospital would not be my first choice, especially with both severity and rarity of your condition. I would definately travel to a teaching hospital or one that has a department that specializes in treating this type of illness. Any form of teletherapy is better than none, but pales to actual direct specialized treatment and facilities.

Although it may sound hokey, both studies and personal experience has convinced me that patient attitude/morale is vital in recovery. Do whatever it takes to keep your spirits raised during this journey. Lean on those who you trust and laugh every chance you can, even when no one else does. Keep strong and let the EVE family know if we can help.

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Thanks for your answer. I’m living in the biggest city in north Norway, so they have all the needed departments for dealing with those things. So i don’t have much traveling, luckily.

And the skin department that is taking care of me atm is specialized in this kind of problems, so i’m sure they will give me a good treatment. The most important thing is that they can have this disease under control and not lose it, because if they lose it, i might be in big troubles.

On friday (in 3 days) i will know more on what will happen.

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Sorry to hear about your illness. At least you know what it is now.
Keep a good notebook of everything. It will help you track progress, medications etc.
You will likely be with this for a while so stay positive. It’s gonna be hard.

Wish you well with your treatments.

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Well, the link to the Mayo clinic states that it’s suspected to be a kind of inmunological disorder. What I can tell you is that stress and mental attitude have a large impact on the inmunological system.

So my suggestions are: trust your doctors. They have diagnosed you correctly and are applying the right treatment. You’re young and your body haves plenty of energy and resources to fight back, and it WILL fight back. So everything is gonna be OK. Love your feet. Love your body. They will heal and liberate you from this worry.

And no matter what happens next, remember: it will be over eventually.

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Update time. I have now been to the hospital. And the new medicine i have started to use seems to be working pretty well so far. My wounds aren’t that red anylonger and i don’t have as much pain in the foot as i had before i started with this medicine. And the wounds also seems to have healed itself a little to. So because of that, i didn’t had to be hospitalized, yet. I will go on a new control on tuesday next week and then we will see how the foot is then and take things from there.

So i will continue with this medicine until i’m told to stop with it as it seems to be working well on me now. And i also think that i’m rather lucky to have got this diagnosis pretty fast where the doctors also have managed to find the right type of medicine for me that will help the wounds grow.

I know about someone who have been fighting for like 18-19 months to try and find out that they actually have this ‘Pyoderma’ disease. Here we used only like 3-4 months.

So, it looks positive :slightly_smiling_face:. And that makes me happy.

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Yesssssss! \:relaxed:/ :ok_hand:

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Thanks.

But just remember that even though things looks good now, this is still one very aggressive disease that can turn things around in just a day or two. It has done exactly that 3 times now already where things have been looking really good and then 2 days later everything is a mess again.

But i will stay positive and hope for the best anyways :smiley:.

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Even most aggresive disease cant deal with this:
image

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Ok, time for a new update. I just came home from the hospital now. For the last 2 days my foot has started to gain more and more pain, so i was thinking that something was going on. And yes, i was right. My wounds have started to get worser again and i now have gained another infection in the foot.

The pain i have in the foot now is quite intense, so i have to go on 1400mg with pain killers 3 times a day. And i also have to increase the medicine i’m taking for the ‘Pyoderma’ disease from 40mg to 60mg every day.

I’m not sure where this actually will end. It’s like a never ending rollercoaster. One day my foot can be fine and the next day it can be a mess.

However, i’m going back to the hospital in 2 days for a new appontment. On friday in 3 days, i’m actually gonna have an operation to remove another wound on my left shoulder (might have something to do with the Pyoderma disease to do). So they are taking good care of me.

EDIT: The operation of the wound on my shoulder is delayed because i have to take an MR-scan of my shoulder first that i wont be able to get before friday.

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I did read that the areas around and in the wound are very fragile and sensitive.

I dont know, dont you have to be in hospital all the time until the wounds will heal completely? :thinking:

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It was mentioned that they wanted to place me at the hospital last Tuesday when I was there. But that was before I started with the new medicine. So they just want to see if the medicine will work first.

So I might end up at the hospital very soon if the foot just gets worser. It has been mentioned so there is a high possibility that it might happen.

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Its far more common than you think. about 1:100,000 in the US. Prednisone is also the typical medication of choice as a corticosteroid.

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Yeah, they said that they was actually treating some others at the hospital with the same disease as i have, so the ratio on how many peoples have it might vary alot from place to place.

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Sorry to hear about the set back; your analogy to a rollercoaster ride is quite acccurate.

I have a couple of questions about your treatment history.
Have they done testing to determine if IBS/Crohn’s disease is present?
Have they done testing for Arthritis?
Why are they planning a surgical procedure on your shoulder, when any wound is contraindicated?
Have they discussed hospitalization until the effective treatment dosage and evaluation of your underlying health has been determined?

Don’t be afraid to actively research your problem and to question ongoing medical treatment. Reach out to support groups outside of your country for possible treatment alternatives. Keep a positive attitude and do whatever you need to do to maintain it. Get well soon!

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They have done alot of tests on me, but i don’t have the full control over what tests they have done. The only test i know they haven’t done yet, is taking a biopsy of my skin. But the reason they haven’t done it yet, is because they fear that it might trigger the same thing with that as my foot has now. But that will be done a little later.

They have also done most of the blood tests they are able to test to, so they found nothing wrong there.

The operation to remove the wound on my shoulder is delayed because i have to take an MRI-scan of my shoulder where the wound is first, so they know more exacly on how deep the wound is and if there is something else there that they aren’t aware of.

As my foot doesn’t seems to be better after i was at the hospital on tuesday, then i think i’m very close to be hospitalized. But i will find out more tomorrow morning.