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Second Time Round

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Didan11 View Drop Down
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    Posted: 01/August/2012 at 9:04am
Just been to the Drs after finding my AA is back after only have small patches for 2 years (lost over 40% last time and went on for 5 years).  Nothing changes she said they usually do not refer AA patients and it grows back!!!  I told her last time it did not grow back for 5 years.  Anyway got my referral.  It is coming out quiet quickly this time, the patches are joining together and I have a very long wide patch at the back, which I can hide at the moment.  It all happened within 2 weeks, I know as I have a good hairdresser who keeps me informed of new patches and she said when she cut it 2 weeks ago she said I only had the usual one small patch with some fluffy hair growth. 
 
Has anyone else experienced this and is it worse the second time around???  Thought I would not be so upset this time, but I am gutted.  Cry
Didan
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Katy J View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katy J Quote  Post ReplyReply Direct Link To This Post Posted: 02/August/2012 at 7:38pm
Sorry you're so upset Didan.
 
I've been through the same as you. My AA has lasted 19 years never quite fully growing back in between bouts. This is my third bad bout and it's lasted about 4 years so far, falling out very slowly but steadily until I have very little body hair, one eye with a few lashes and brows left and an ever decreasing patch of hair on the crown of my head.
 
Like you I thought I wouldn't be so upset this time cos I'm an old hand but it doesn't seem to follow any rules. It's devastating and to make things worse I find that because I've been through it before people expect me to just get on with it and not let it bother me.
 
We're lucky where I live in Dundee cos the Dermatology consultant who runs the hair clinic at the hospital is very good and very sympathetic. She tells it like it is and if she thinks a treatment will help she'll ask if you'd like to try it and likewise if there's something you've heard of but she thinks it's a waste of time she'll tell you why.
 
I hope your referral comes through quickly. Have a look at the posts on the site about treatments etc and if you want to know what questions to ask give us a shout. There's a lot of experience on the forum and everybody is really helpful.
 
Take care and keep posting cos it helps to get it written down and out of your system.
 
Kate Hug
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Didan11 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Didan11 Quote  Post ReplyReply Direct Link To This Post Posted: 03/August/2012 at 9:13am
Thanks Kate
 
No, 19 years is a very long time, I am so sorry.  How do you cope (getting upset just thinking about your hair).  People can be so cruel with there remarks from staring to saying oh thats not too bad, I hate it. Do you wear a wig?
 
Been to Drs she said they don't normally refer alopecia areata as it grows back!!! However, because of my previous episode I was able to inform her differently (she was a very young Dr) and I got her to refer me.  I pointed out that blood tests should be done to rule out the usual (hormones, thyroid etc) and that if it got bad like last time that the dermatologist was the only one who could prescribe a wig!  It is a bit worrying that if I had been new to this and had a thyroid problem that the Dr would not have done the blood tests.  Things have not changed since the last time.
 
Just got to wait for my appointment now.  I mentioned it to one of the girls I work with that it had come back and she said she also was a sufferer and had lost 40% of her hair and still got patches but managed them with minoxodil (?? spelling).  I have now told all in my department in case it gets bad.  I work in a private hospital, funnily in the Pathology Department so the biochemists have told me what blood tests I need and to get a copy of the test results and they will look at them for me!
 
I hope my appointment is not too far away.
Didan
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Katy J View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katy J Quote  Post ReplyReply Direct Link To This Post Posted: 04/August/2012 at 9:40pm
I'll keep my fingers crossed for you Didan. I don't really wear wigs much these days. I keep them for if I'm going to a night out or if I know I'm going to a meeting at work. I just find that if I wear one at work I can only last an hour or two max before it's all I can concentrate on. I wear buffs (know that's a brand but don't know what else to call them) most of the time and if it's hot in the house or at work I go bareheaded now. I don't pay much attention to other people and what they might think now but I wouldn't go out to the local shopping centre uncovered.
I still get my wig prescription every year though because I find that they don't last too long. I wouldn't take a real hair wig (even if I was loaded) as I would feel like a fraud and wouldn't want to deprive a child or someone who really needed the hair. There's such a shortage these days.
I never get the same style twice lol so I can never decide what one to go with when I do wear one and then people are always surprised when I turn up somewhere and sit next to them.
My blood tests all came back normal - or within normal limits - each time it's fallen out and whenever I've asked a GP really,  but they only ever do bloods, never ask if I had other symptoms or do any joined up thinking that alopecia plus a, b, or c might mean I do have d or e.
I've decided to leave my body to science so they can poke about and find out what is really wrong with me lol. Be a bit late but they might find something in a post mortem that will help them diagnose other people with alopecia.
And next time you speak to that quack who says AA grows back you can tell him/her to contact me Wink  Let us know how you get on
 
Kate xxx
 
 
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Didan11 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Didan11 Quote  Post ReplyReply Direct Link To This Post Posted: 07/August/2012 at 7:47pm
I am still waiting for a referral date, but will be sure to give Dr your details, she obviously needs some educating in AA Tongue
 
I have still got all my wigs from my last episode, including my wig from Trevor Sorbie - would highly recommend using his service for wigs the best day of my AA and the wig looked absolutely fabulous.  Had to wait for months to get an appointment though, he is a very nice person and does it because his friend lost her hair and realised how important it was to us to have a nice head of hair. 
 
I now have a small patch with missing hair in my eyebrows so will have to buy an eyebrow pencil nowConfused
Didan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kelzababy Quote  Post ReplyReply Direct Link To This Post Posted: 07/August/2012 at 8:07pm
hi didan i have alopicia areta two and mine started very small i was in scotland when my other half noticed the small patch when i came home it was bigger and went to my gps and told me it was aa i had blood tests to rule out if there was something making my hair fall out and i went for a second opinion and got told the same thing as it was getting bigger and he told me there was nothing he could do for me and refered me to a derm i see them in two weeks time and have just found two more patches and i feel dishearted now but need to wait till i see derm im sorry ur upset and its happening to u again if u need to talk im here x

kelz x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Yasmin5 Quote  Post ReplyReply Direct Link To This Post Posted: 09/August/2012 at 3:58pm
Heyyyyy
 
I've had AA for 5 years, since I was 15, I am 20 now. I had little and bigger patches that grew back with the treatment I was having (steriod injections into the patches very month) which I am still having done every month. The patches were easy to cover as I HAD such thick, fizzy/curly hair, so it didn't get to me that much. In the beginning of Dec I went travelling for 5 and half months (as my hair was doing okay) so I couldnt have my treatment and throughout the months I was away it just got worse and worse and still is, I've lost about 90% of my hair now :( I have to wear a wig, which isn't as bad as I thought it would be but I never thought it would get this bad. I got back in the middle of May and started the injections again which have seemed to stopped working all together, had a little bit of hair growth this month but my hair is still falling out!!!! What treatment do you have?
 
I hope youre okayy, hopefully yours won't be worst second time round!! smileeeee :)
 
Yas x
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Didan11 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Didan11 Quote  Post ReplyReply Direct Link To This Post Posted: 22/August/2012 at 5:03pm

Hi All

Well I got my referral date ... for 14 January 2013!!!!!  I cried my eyes out, by then I probably wont have any hair left.  Also the appointment is not with the hospital I requested, which I went to last time.  So made another appointment to see Dr, this time a different one she is referring me to the hospital I have requested so hopefully it wont be so long away.  Apparently the hospital they originally booked me with was to see a professor so he is probably overworked.  As there is not much they can do I thought I might as well see the original dermatologist I was with last time.  Things certainly have not changed in two years!  At least now I have my appointment for my blood tests.
Didan
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