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Newbie and afraid
Hi.
I was told in feb that I have AA. Since finding the patch in Feb, I have a 50p size patch just above my ear and it's starting to spread up my hair line to my middle parting. The strange thing is I still have hair in the patch, just very thin and very spaced out. I've been told not to brush my hair when wet, not to use my hair dryer, and not to use my straighteners. I was also advised to use alcapin shampoo which just dries my hair out. I've been given steriod cream and have been using for two months. The doctor said he won't refer me to a dermatologist as they don't like giving steriod injections anymore.
I just don't know what to do. Can anyone offer any help x
Replies to This Discussion
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Permalink Reply by Crissy on
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I was also was told in Feb that I have AA. I started with 2 spots, 1 was about dime size about midway up by my ear, and another spot right on the top of my head that one was peachy in color but the hair was thin, not bald. I went straight to the dermatologist and have been getting steroid injections every month (3 months total). I have several new spots, but the 2 older spots never went totally bald. Those 2 spots are very thin but still have hair, the spot by my ear has grown a lot bigger but still has hair in it just very thin.. My derm Dr told me to keep doing everything the same things that I have been doing not to change that way I care for my hair. I don’t know if that is the best advice, that is just want the told me. Although I don't think the injections are really doing anything maybe made it slow down some, but more spots just keeping coming. It is hard to deal with I always had very long and thick hair. I understand how you fell, at little lost on what you should or should not do.
Hope that helps you some.
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Permalink Reply by LC on
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I wish I could offer advice, but I am also new to this diagnosis. I also have AA, and I was diagnosed this month. I hope it helps to know you are not alone. My doctor and dermatologist both recommended steroid cream, followed by injections if necessary. I wish you the best of luck in his unpredictable experience.
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Thanks for the advice? Can I ask where your patch is? Are you in the UK?
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hey another newbie here still awaiting an appt to even see derm to get full diagnosis - spend a lot of time in tears how do you guys cope? I am also someone with long hair but I am loosing my hair all over my body not just head I am so upset. What do we do eh xx
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Vicky, I have spent many moments in tears. So far I only have one spot that is completely covered with my hair left down. I can't seem to make the diagnosis reality in my head. I do, however, have moments in terror of how this will progress. I also have nightmares so often, since my diagnosis, about my hair falling out. The hardest part for me is that the outcome of this diagnosis is so uncertain, making it so that there aren't a lot of answers to my questions. I want to know how much of my hair is going to fall out, if I'm ever going to be bald, etc. I hope it helps, knowing that you aren't alone in your fears.
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it's such a cruel thing isnt it, our hair is so much of us but it really is the what is going to happen. I guess you learn to accept it in the end or more used to it. Mine was told it was a mix of AGA and TE by the only doc seen but awaiting seeing my GP for a sensible ref as he did nothing other than glance at my scalp and said minoxidl off you go. As mines on top of my hair mines visible most when down so cope best in a loose up do. But mine comes out in my hands if I touch it all over my body getting to the point I do not want to brush or wash it as I get so upset when its coming out in great lumps. I am going to a leading hair place in London in a few weeks to see if I can get a better diagnosis while I wait for the NHS to even get me past the GP :-( sending hugs back. Where you from?
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I struggled with seeing extra hair tangled in my hands, during my shower this morning. A challenge for me is that even when I manage to forget about my hair, there are reminders everywhere. I will notice someone's cute hair, feel my hair blow in the wind, see a balding man, etc. and suddenly I'm back to obsessing over my hair. This experience is cruel. I'm from Michigan (U.S.).
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My GP wouldnt even refer me to a dermatologist not advised me about minoxidil just gave me steriod cream and sent me on my way. Since writing this post ive had a bigger shock.. ive looked at past photos and I went to a weddiny last year where my hair was pinned up and you can see the patch then and I didnt even notice.i suppose the only good thing is that I dont have any other patches. The bad thing is that it hasnt grown back. Ive been using the steriod cream now for 2 months and thats shown no signs of making it better. Ive booked in to a hair treatment place on the 14th may as they have a promotion on consultations and they will be able to give me alot more answers.
I hate being me at the moment. Feel scared to go out. Paranoid about every little hair I find. But then I come on here amd see how brave you all are. I just wish I could find your strength to get through it.
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Permalink Reply by Soisy on
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I was diagnosed in Jan. since then i lost all the hair all over my body. its very frustrating, i am just trying to cope with it all, but not sure what to do. the injections did not work, which we didnt think it would. not sure what to do at this point then to just wait it out and see what it does, since this disease is known to have a mind of its own.
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I too am new at this, well I guess not so much anymore as my fun filled journey of AA (said not one ever) started in November of last year. It has now been 6 months and what started as a dime size spot has turned into probably a dozen spots all in different sizes. I have been to countless doctors and every specialist around I've had the creams the injections and even been put on diabetes meds tho I'm not diabetic. In the end I've decided that it has to run it's course. Yes I've had regrowrh in those first few spots but more keep popping up. I've been off work for the last two months and am due to return in a week and am terrified to go back as I deal with the public and am still hiding the spots. Good luck in your journey but this disease does suck all the way around!!
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Permalink Reply by Ellen Chinery on
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Hi Nikki!!!
I'm so sorry to hear about your recent diagnosis! But remember, a few patches certainly doesn't mean it will continue. As stated before, this condition can be so unpredictable! I developed AA about 5 years ago, and within a year lost all the hair on my head and body. After two years everything grew back! But now I struggle with patches falling out and growing in, which has been difficult. I can just share my own experiences, and when my hair started growing back I started doing cortisone injections. After a while, I realized it wasn't doing much, and I think the cortisol hormones added to my anxiety! Once I stopped the injections, all of the patches that had been receiving the medicine fell out anyway! I haven't had any cortisone shots or any treatment for like 8 months...and new patches show up once in a while. I use voluminous shampoos without any sulfates or dyes and brush is when it's dry. I use coconut oil on my scalp once in a while, but it's so goopy, I don't like to use it too often.
I spent a lonnnngggg time searching for answers and fixes, and all that did was make me feel crazy. And today, I try my best not to think about my hair. I do not mean to say that any of this is easy. It isn't always, and it is so worrisome having patches and wondering what will happen next. The only thing I can say is just try to take things a day at a time. And try not to think about what could happen :) I hope you find some support on this site!!
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