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Topic: Not CH related -- Need the bottom line info (Read 400 times) |
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echo
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Not CH related -- Need the bottom line info
« on: Oct 1st, 2002, 3:58pm » |
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If anyone can help me get to the bottom of endless pages of blaaaa blaaaa BS on medical websites my family can.
After 5 different labs have biopsied my scalp sample it has been determined that I have Alopecia Universalis. (Hair loss - Whole body) Hey, I don't do anything half assed. In true echo style I went for the full meal deal.
Here is my question: Will it also attack the inner ear hairs? I understand that my auto immune system has decided to attack it's own hair folicules. I have left two seperate messages for the dr with no return call, they want me to come in for an appointment -- and a few extra bucks -- Tight ass bastards. Just curious.
Thanks
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Bob P
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Re: Not CH related -- Need the bottom line info
« Reply #1 on: Oct 1st, 2002, 4:49pm » |
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Ol' Jack has a variation of this. His hair is falling out too but he still has those 3" long hairs growing out of his ears and nose!
Serious Echo, I don't know. Some quick reading says you lose the hair on your head, body hair, eyelashes and nose hair. I would think that if you lose nose hair, you would also lose ear hair.
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echo
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Re: Not CH related -- Need the bottom line info
« Reply #2 on: Oct 1st, 2002, 4:55pm » |
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Worried about the inner ear hair that vibrates to allow one to hear. It's fine with me that the outer ear hair is gone. Always pissed me off when I had to shave my ears.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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jonny
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Re: Not CH related -- Need the bottom line info
« Reply #3 on: Oct 1st, 2002, 5:01pm » |
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Im just a dumbass Bro but I dont think the hearing hairs are the same as those bastards you got to shave.
Ive heard of and seen peeps that lost every hair on thier body and they were hearing just fine.
Like I said Im just a dumbass but I did see this.
........................jonny
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echo
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Re: Not CH related -- Need the bottom line info
« Reply #4 on: Oct 1st, 2002, 5:04pm » |
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Thanks jonny! You saw it, I believe it, I feel better.
Can't beat this family. Now my real family is a different story.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Slammy
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Re: Not CH related -- Need the bottom line info
« Reply #5 on: Oct 1st, 2002, 5:27pm » |
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Echo,
A good friend of mine has this disease! She has to wear a wig and fake eyelashes. She was on some meds that actually worked, but is very expensive and only worked temporarily... but she has great hearing!
Slammy 
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Charlie
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Re: Not CH related -- Need the bottom line info
« Reply #6 on: Oct 1st, 2002, 5:34pm » |
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Jonny is right.
Never heard of this thing but then I haven't heard of much in the long run. Kinda strange. Sorry I can't help.
On the bright side, you can get a job in sword and sandals films without have to shave. No doubt there are some Pay Per View flicks that would be happy to have you around too.  
Seriously, I don't think hair has anything much to do with
hearing or everyone would know about it. Maybe you retain the good facial stuff....
Charlie
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Ted
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Re: Not CH related -- Need the bottom line info
« Reply #7 on: Oct 1st, 2002, 5:54pm » |
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Hopefully it'll just be hairing loss and not hearing loss.
OK. That pun was so bad I'll tough out the massive flaming I deserve for it.
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Linda_Howell
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Re: Not CH related -- Need the bottom line info
« Reply #8 on: Oct 1st, 2002, 6:06pm » |
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O.K. consider yourself flamed Ted. That was pretty bad.
Oh, and Ted? Change your picure, it's really disconcerting. Linda
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Charlie
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Re: Not CH related -- Need the bottom line info
« Reply #9 on: Oct 1st, 2002, 6:11pm » |
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Dick Head or Pecker Head then?
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Linda_Howell
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Re: Not CH related -- Need the bottom line info
« Reply #10 on: Oct 1st, 2002, 6:16pm » |
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Shut up Charlie!!!!
Linda
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2late
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Re: Not CH related -- Need the bottom line info
« Reply #11 on: Oct 1st, 2002, 6:40pm » |
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whatever you do keep the pic ted, ; it's hilarious ;D ............2late
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Linda_Howell
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Re: Not CH related -- Need the bottom line info
« Reply #12 on: Oct 1st, 2002, 7:19pm » |
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2-late.......you shut up too ( smily face here)
Uh and I noticed he changed it!!!!!!!! Yes! Good work
Ted. Linda
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Slammy
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Re: Not CH related -- Need the bottom line info
« Reply #13 on: Oct 1st, 2002, 7:30pm » |
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on Oct 1st, 2002, 7:19pm, Linda_Howell wrote:
Uh and I noticed he changed it!!!!!!!! Yes! Good work
Ted. Linda
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ahh man! you wimp, Ted! ;D
Slammy
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Ted
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Re: Not CH related -- Need the bottom line info
« Reply #14 on: Oct 1st, 2002, 7:36pm » |
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Hey, Linda's request takes precedent over both of you. She's prettier.
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maria
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Re: Not CH related -- Need the bottom line info
« Reply #15 on: Oct 1st, 2002, 7:47pm » |
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Hey echo, sorry to hear about the hair loss. I don't think you have to worry about losing those inner ear hairs necessary for hearing - thats a whole different ball of wax ;D, compared to those body hairs. Has your Doc talked to you about meds - there are some immunotherapy drugs that have showed some promise in treating this (cyclosporine and prednisolone)? Maria
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jonny
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Re: Not CH related -- Need the bottom line info
« Reply #16 on: Oct 1st, 2002, 8:20pm » |
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I also heard of a drug called "Amawhackbagapiscapol"
Not sure what it does but they talk highly of it.
.............................jonny ;D
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2late
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Re: Not CH related -- Need the bottom line info
« Reply #17 on: Oct 1st, 2002, 8:22pm » |
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echo, hope you catch a break soon, you need it! .........2late
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NancyMcFree
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Re: Not CH related -- Need the bottom line info
« Reply #18 on: Oct 1st, 2002, 8:26pm » |
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Echo, I'd have to agree with the rest of the posts that your hearing should be fine. Look at all the people who loose their hair going through chemo .... they can hear fine .. and actually, their sense of hearing usually gets better during treatment. Take care bud .... I know you are looking just FINE bald !!!!!!!!!
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The mad viking
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Re: Not CH related -- Need the bottom line info
« Reply #19 on: Oct 1st, 2002, 8:29pm » |
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Try and relaxe Echo my friend.This thing is proof that you are groing up ;D ;D  
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Always Look on The Bright Side of Life
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don
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Re: Not CH related -- Need the bottom line info
« Reply #20 on: Oct 1st, 2002, 9:02pm » |
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Ted
You are fortunate that I ignore eveything you say otherwise you would be a 10 alarm blaze right now.
Quote:hairing loss and not hearing loss.
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Christ!
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Ted
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Re: Not CH related -- Need the bottom line info
« Reply #21 on: Oct 1st, 2002, 9:09pm » |
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Has anyone seen Don? Seems like years since I noticed him around.
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Peppermint
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Re: Not CH related -- Need the bottom line info
« Reply #22 on: Oct 1st, 2002, 9:14pm » |
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Jonny,
Quote:| I also heard of a drug called "Amawhackbagapiscapol" |
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ROTFLMAO...I forgot what I was pissed off about...
pEP
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Linda_Howell
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Re: Not CH related -- Need the bottom line info
« Reply #23 on: Oct 2nd, 2002, 1:15am » |
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Shut up Don.
Ted....your new and improved pic is great.........Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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echo
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Re: Not CH related -- Need the bottom line info
« Reply #24 on: Oct 2nd, 2002, 8:08am » |
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Thanks everyone. I appreciate the support, the information and especially the laughs.
Take care of yourselves everyone. Hope you all have a PF day.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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