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Permalink Reply by Schocker on January 29, 2014 at 5:42pm

Thanks, Aimee......It just seems that there would be some threshold or precipice at which this bizarre thing would either stop or just keep going the whole way......I guess the uncertainty of it all feels like insult to injury in some way.  Acceptance is a difficult task when I have no idea what it is that I am faced with accepting!

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Permalink Reply by BaldheadSlick on January 29, 2014 at 9:45pm

I understand how you feel exactly. When I my patches first started, it only effected my head and progression was slow. Then all of a sudden it progressed to AU. So for me, there really was no specific time when I knew it was going to be one way or another as even when I have regrowth now, some areas come back, some don't, but it all leaves again.

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Permalink Reply by melissa on January 30, 2014 at 8:33am

I think it is very different from person to person.  I myself started at 4 yrs old with AA, it lasted a short period of time and then my hair all grew back. It wasnt untill i was 16 yrs old that my hair would start falling out again, slowly at first, i had many half dollar sized spots all over my head but was lucky enough that the hair that i did have would pretty much cover all the spots. By that time i was begining my senior yr in highschool and was devestated by what i was going through and the treatment that i got from people who just didnt know.  I decided that i needed to try anything i could to make it stop,it was my senior yr, i was supposed to be living life on top of the world, and all i wanted to do was hide.  So it began treatment after treatment. the steroid shots in my head were the most painful..the topical cream that baurned the scalp and left it brown & scaley to creat regrowth was awful and just made people look at me even more differently. then the light box, that was ok, but because of all this, now i had to wear dark glasses just to go outside. My dermatologist had also put me on oral steroids which caused weight gain and irritability.  We started talking of more aggressive treatments after all those things had failed. These new treatments we were talking about carried side effects such as liver failure and kidney failiur to name a few...All for hair?!?  Thats when the treatments stopped, and i let God take control.  My hair continued to fall out and then i noticed i wasnt having to shave my legs anymore (That was really ok with me :) )  By the time graduation came in june of 94 my hair was so thin i spent an hour just trying to pin my cap so it would stay.  A couple more months and i was hair free and offically diganosed with AU.That was 20 yrs ago,and it has been a very long road for me, it has taken a long time to be ok with the AU. I am me hair or not.  I did loose a lot more then my hair in the process, I now suffer from SAD (social anxiety disorder) GAD (generalized anxiety disorder) Panic And Agorophobia. The yrs of trying to hide my baldness, the shame and embarresment took a toll. I so wish I had really understood back then, it just hair!!!!     Not sure if this helped you any, but i know for me it makes it easier knowing that even though AA /AU treats us all different, we really are not alone.  Best wishes on your journey

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Permalink Reply by Lisa Santer on February 2, 2014 at 8:44am

It's unpredictable. You might stay AA, go to AU and stay, have it all grow back and stay, or shift among them. I was told once that my then-ophiasis pattern (losing hair around the edges of my scalp) meant it probably wouldn't grow back. It did tho, more than once and for years at a time. I've also had AT & AU at times. The unpredictability can be one of the most challenging things about living well with hair loss--just as we get used to how things are and how to live well that way, it changes. I just figure there are many things in life we can't know, and what's going to happen with my hair is one of them.

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