Discussions By Condition: I cannot get a diagnosis.

ECD a post to all who are wondering

Posted In: I cannot get a diagnosis. 31 Replies
  • Posted By: GivenUp
  • March 30, 2008
  • 10:29 PM

ok well my last post in the Fibro forums... forget about me not telling you guys.

i feel like since i brought it up i should tell you

anyway i have Erdheim Chesters Disease. i visit and read the forums of the HAA (Histiocytosis Association of America) i do not post, but i read.


there are a few other known people who have it in the world today, the HAA has a forum for it and forums for all the disease that are like ECD

anyway you can let this thread die to the last page :D


hugs to all and i hope everybody has a great day

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31 Replies:

  • Ahhhh hun so thats what it is, ive never heard of it b4, i must read up on it ! is it something they can treat/cure or is it something u have to live with ? I will look it up ! hope ur ok ? haven't seen tay on now for a couple of days, i hope she's okay i know she wasn't doing to well. Tay if ur about chirp in ! miss u hun ! Right little minx i'll check on u tomorrow, keep ur chin up ! big Hug :)x
    Tootsie 628 Replies Flag this Response
  • Ahhhh hun so thats what it is, ive never heard of it b4, i must read up on it ! is it something they can treat/cure or is it something u have to live with ? I will look it up ! hope ur ok ? haven't seen tay on now for a couple of days, i hope she's okay i know she wasn't doing to well. Tay if ur about chirp in ! miss u hun ! Right little minx i'll check on u tomorrow, keep ur chin up ! big Hug :)x they say it can be cured, but it cant. it can be controlled but it does flare it there has only been about 200 cases of it, ever. so doctors know little to nothing about the disease. also if its not treated in 24 - 48 hours then you... die. i was treated on the 43rd hour. the only thing they can really help is to keep me from gonig into respitory distress. then respitory failure (which is how they think you die from the disease) i went into respitory distress, was hours away from death and they gave me all sorts of treatment. then they took me off treatment little by little until i went into respt distress again. the last treatment they took me off was the one to treat ECD, thats how they figured it out so yeah i have to live with it, its very hard at times EDIT: also id like to say, tay if you are reading this im praying for you and we all hope your ok!
    GivenUp 135 Replies Flag this Response
  • U'll be sick to death (hmmmm maybe that wasn't the best way to phrase that) but ya know what i mean....Uve got to "Stay Positive" sometimes its not possible but ya have got to fight back to retain it. It was the only way i could change things, when ur down there's only one way u can go & thats up! So it was me adopting this Postive Attitude that I got up again & refuse to go down no-matter how bad it gets......its not easy but when u have no other answers its all ya can do......so hun u will get through this "Some How, No Matter What" ! Actually i have longer periods of well being than i had, so it has its benefits ! Sure uve got us.......lol:D Hugs again :)x
    Tootsie 628 Replies Flag this Response
  • U'll be sick to death (hmmmm maybe that wasn't the best way to phrase that) but ya know what i mean....Uve got to "Stay Positive" sometimes its not possible but ya have got to fight back to retain it. It was the only way i could change things, when ur down there's only one way u can go & thats up! So it was me adopting this Postive Attitude that I got up again & refuse to go down no-matter how bad it gets......its not easy but when u have no other answers its all ya can do......so hun u will get through this "Some How, No Matter What" ! Actually i have longer periods of well being than i had, so it has its benefits ! Sure uve got us.......lol:D Hugs again :)x yeah i agree, having a positive attitude does help! and it does suck, i have had so many friends and loved ones pass from things worse than i have. my hubby for example, that was a time where i had somebody to actually care for me when i was sick. it really does suck.... having something that almost no doctor knows about. some days i puke my mind out and hurt all over, and other days i feel good. then i have those inbetween days, the tpye where you are in pain and sick but you still feel good. its also very weird.. or confusing? to have something that even you dont know about, seriuosly i know nothing of this disease. the only thing i know is that it causes respitory distress and Respitory failure. it is weird to not know how this affects me, kinda like its hard when you are looking for a diagnosis. but the very sad truth is that there will never be a good treatment/cure. there are drugs that show improvement. but they dont help for long. the numbers for this disease are.... just insane. i read that its a 1 in 10 million chance to be born with this. and the very weird part is that it only shows at the ages 20 - 40. but then again 1 in a 10 million chance, thats wrong. it should be more than 1 in every 200 million, or any other very high random number lol. becuase think of it. in all the world has probably had around 10 billion people on it (not at once) and there have been only 200 cases. so 1 in 10 million sees to be wrong lol anyway, everything can be fought, you may not be able to win but you dont know if you dont try hugs to you and all! have a great day everybody! (in case u didn't notice, lol i am going to use pink and bold to type from now on :))
    GivenUp 135 Replies Flag this Response
  • hi guys and gals, Tootsie! where are you :( i hope your ok, and i am very worried about taylor! please come back to us!
    GivenUp 135 Replies Flag this Response
  • Hi Little Minx, hope u had a good day today ? Im well, not long home from work, im so tired already had a few zzzzz's, def having an early nite tonite ! Ive bn wondering about tay also, i hope she's ok ! i'll give her a shout ! Tay where r u ?nope....no answer !
    Tootsie 628 Replies Flag this Response
  • Hi Little Minx, hope u had a good day today ? Im well, not long home from work, im so tired already had a few zzzzz's, def having an early nite tonite ! Ive bn wondering about tay also, i hope she's ok ! i'll give her a shout ! Tay where r u ?nope....no answer ! im good i guess, a little bit of vomitting nothing unusual tho. yeah hah i got off work about 3 hours ago im fairly tired myself! also i am starting to get very worried about Tay! i really hope shes ok, Tay please shout back at us!
    GivenUp 135 Replies Flag this Response
  • Hopefully she'll turn up soon.......its funny for all us who have never met one another ya miss them when theyre not about.......do hope she's okay.:confused: I was looking up about ur illness....one thing i come across was a lady who has bn trying different treatment......she's just had 6mths of chemo & they say she's made a good improvement ! what treatment are they offering u ?
    Tootsie 628 Replies Flag this Response
  • Hopefully she'll turn up soon.......its funny for all us who have never met one another ya miss them when theyre not about.......do hope she's okay.:confused: I was looking up about ur illness....one thing i come across was a lady who has bn trying different treatment......she's just had 6mths of chemo & they say she's made a good improvement ! what treatment are they offering u ? yeah lol it is funny, but when we all get along on here i guess it just makes us feel like we know eachother some how since my diagnosis i have been given Naproxen 500mg it has helped some, its like asprin x 10 and its an anti imflamitory. i might try chemo but i am so afraid of things like that, thats most likely why i have not tried it already thanks for the suggestion! if i can get the courage to do it i will :)
    GivenUp 135 Replies Flag this Response
  • Really sorry uve got this.......trust u to go for the rarest disease......no common ordinary virus for u ! Its hard to find alot of information about it, not alot on the net. I know the chemo wud be hard to go through but u will know urself when the time is right........big hugs hun.......if only that could cure all ill's !:)
    Tootsie 628 Replies Flag this Response
  • Really sorry uve got this.......trust u to go for the rarest disease......no common ordinary virus for u ! Its hard to find alot of information about it, not alot on the net. I know the chemo wud be hard to go through but u will know urself when the time is right........big hugs hun.......if only that could cure all ill's !:) dont worry, i can live with it :) yeah i am alway around people then weird things happen, my friend is on chemo. they found a heart murmur and some type of cancer (i forget what it is called, it was really weird) thats why in that thread i made about my friend i kept saying is my fault ect. i might try chemo soon.. not to sure. i want to do it but i just cant get the courage to actually.... do it lol since my hubby passed (R.I.P) it has been harder because i dont have any help taking care of myself, my parents just dont like me and i dont want to dump my problems on my friends, so i feel like im alone with this sometimes. but good thoughts do help! i hope you have a great day Tootsie! BIG HUGS to you and to all!
    GivenUp 135 Replies Flag this Response
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  • dont worry, i can live with it :) yeah i am alway around people then weird things happen, my friend is on chemo. they found a heart murmur and some type of cancer (i forget what it is called, it was really weird) thats why in that thread i made about my friend i kept saying is my fault ect. i might try chemo soon.. not to sure. i want to do it but i just cant get the courage to actually.... do it lol since my hubby passed (R.I.P) it has been harder because i dont have any help taking care of myself, my parents just dont like me and i dont want to dump my problems on my friends, so i feel like im alone with this sometimes. but good thoughts do help! i hope you have a great day Tootsie! BIG HUGS to you and to all! oh i forgot to mention that the test to diagnose me was scarey, they put me to sleep and took a peice of a mass that ECD causes, then they use something to see if it changes color, it was "CD68" (im fairly sure it was CD68 but i dont really remember) positive. which basiclly means ECD lol. they did that test shortly after they took me off the medication (to see if the symptoms returned) so yeah i guess i got lucky. thats why i dont see this as a bad thing, at least im living and i love everyday of it! :)
    GivenUp 135 Replies Flag this Response
  • Hey little minx im off to work now, Hope u have a great day, chat later, hope tonight i'll be a bit more life in me......lol hope tay shows up today ! byeeeeeeeee for now :)hugs
    Tootsie 628 Replies Flag this Response
  • Hey little minx im off to work now, Hope u have a great day, chat later, hope tonight i'll be a bit more life in me......lol hope tay shows up today ! byeeeeeeeee for now :)hugs hi, im not doing so great today. throwing up more than usual, massive amounts of pain and my pain meds are not working. so i may not be on today. i really hope Tay does show up to!
    GivenUp 135 Replies Flag this Response
  • hi, im not doing so great today. throwing up more than usual, massive amounts of pain and my pain meds are not working. so i may not be on today. i really hope Tay does show up to! Ahhhh sorry uve had a bad day hun , hope u feel better tomorrow ! Still no sign of tay then........hmmm wish she wud show up, concerned for her ! Big Hug........................decided on green today seeing im on the Emerald Isle & uve turned all girlie pink ! lol :D
    Tootsie 628 Replies Flag this Response
  • Ahhhh sorry uve had a bad day hun , hope u feel better tomorrow ! Still no sign of tay then........hmmm wish she wud show up, concerned for her !Big Hug........................decided on green today seeing im on the Emerald Isle & uve turned all girlie pink ! lol :D if only hugs and happiness could cure pain, i realise how miserable my life is.... but i keep pushing. no reason... i just do........ and now i dont quite understand why. i can pretend to be happy... but deep down i know how it really is. we all know that if we could go back just before we became ill ect, we would change it so that it never happened..... sorry im just in a blue mood lately, Tay has not been here for awhile, my parents.. ect, i just needed to vent i guess..
    GivenUp 135 Replies Flag this Response
  • if only hugs and happiness could cure pain, i realise how miserable my life is.... but i keep pushing. no reason... i just do........ and now i dont quite understand why. i can pretend to be happy... but deep down i know how it really is. we all know that if we could go back just before we became ill ect, we would change it so that it never happened.....sorry im just in a blue mood lately, Tay has not been here for awhile, my parents.. ect, i just needed to vent i guess.. Ya know hun i wish i could help ya, i really do.......I also know some parents are far from helpful. My mum was a nightmare when i took so ill back in 1988, my dad died in 1987, so i to went through it on my own with a child to bring up. So I totally know how u feel. Have u any aunts are anyone who would help u get through this or really close friend ?My advise to u is confide in someone how u really feel about everthing, u need support. I put a brave face on & didnt talk to anyone not even a close friend but believe me that really does make things worse ! Now I would be very open, it gets it off ur chest ! Do u have to pay for ur health care there ? If u couldnt work do u get any help financally ? If u had this chemo would a friend stay with u to help ? I so wish i could help u ! Hugs :)x
    Tootsie 628 Replies Flag this Response
  • Ya know hun i wish i could help ya, i really do.......I also know some parents are far from helpful. My mum was a nightmare when i took so ill back in 1988, my dad died in 1987, so i to went through it on my own with a child to bring up. So I totally know how u feel. Have u any aunts are anyone who would help u get through this or really close friend ? My advise to u is confide in someone how u really feel about everthing, u need support. I put a brave face on & didnt talk to anyone not even a close friend but believe me that really does make things worse ! Now I would be very open, it gets it off ur chest ! Do u have to pay for ur health care there ? If u couldnt work do u get any help financally ? If u had this chemo would a friend stay with u to help ? I so wish i could help u ! Hugs :)x i have aunts but they all live far far away, i dont want to force my problems on my friends or id have asked them by now. i agree i need somebody to talk to, but some people just dont understand :( its like they need to go trhuogh it to actually know how hard it is. nope, we get free health care in canada, well not really free we pay for it with the very high taxs lol i work a little, im glad my boss is so nice because i can hardly ever go in and even though i can barely make 5 hours a week, he gives me the same amout of money that everybody els gets. so i feel blessed to work with him if i did chemo i could have a friend stay with me, so i guess thats not a problem thanks for the support :) just going through a rough patch lately big HUGS to you Tootsie love ya, and the rest of you!
    GivenUp 135 Replies Flag this Response
  • i have aunts but they all live far far away, i dont want to force my problems on my friends or id have asked them by now. i agree i need somebody to talk to, but some people just dont understand :( its like they need to go trhuogh it to actually know how hard it is. nope, we get free health care in canada, well not really free we pay for it with the very high taxs lol i work a little, im glad my boss is so nice because i can hardly ever go in and even though i can barely make 5 hours a week, he gives me the same amout of money that everybody els gets. so i feel blessed to work with him if i did chemo i could have a friend stay with me, so i guess thats not a problem thanks for the support :) just going through a rough patch lately big HUGS to you Tootsie love ya, and the rest of you! Hun i hate to think of u going through this on ur own. I would pick one friend only to confide in....why i say this is because some are more understanding than others, some might make u laugh another might moan, another will just have there head up there arse...lol......but another could be the right one & be very helpful & caring !....... we get all sorts of differnent things out of different friends, so really a true friend would not want u to be so burdened & deep down they may already know but if u are keeping the brave face up they will not be able to help u........im talking from experience now...............trust me..............at the end of the day it was my really true friend that was there at the end for me & still here today, throughout all ! Its a 2 way thing, if it was the other way about id be there for them also & they know that ! You can pick ur friends but u cant pick ur family ! Ya know hun if it was possible for u to have ur treatment here i would look after u........i mean that ! Do u mind if i ask u what age u are ? im guessing about 28 ish ? Thats how old i was when i took so ill. Look if i could come through it u can......reach out & tell someone the whole truth, let them know how vunerable u are feeling . Think about it, if one of ur close friends where going through this would u not wany to know & help ?
    Tootsie 628 Replies Flag this Response
  • thanks Tootsie, i value your advice! thats why i am going to fly across the planet and see what my parents say/do when i show up on their door step. my best friend said they could help me but they would have to quit their job because her boss is VERY mean and makes her work like crazy. and i dont want her to quit her job just for me. so ill see you guys in a few months! bye guys. oh yeah and my friend that i posted about, hes fine! it was a parasite. racoon round worms or something. but he is fine now! love you all! see you in a few months
    GivenUp 135 Replies Flag this Response
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