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Comment by Susan Innes on February 18, 2012 at 4:05pm

Your situation may be a bit different, Lexi. From the time the bald area appeared at the nape of the neck and in the temples to the period of 90% loss, it took less than a year. (My 2 uncles with the disease had lost everything in 6 months with no regrowth.)

Then, there are the other people who have a full head of hair a few years later; we may not hear from them. I think there's always hope for 5-6 years after the loss. Supposedly, if it's been longer than that, the chances of anything but a bald head are pretty slim.

Yeah, it's a great rollercoaster ride:).

Comment by Lexi on February 18, 2012 at 3:55pm

Nice, Susan. so reassuring to know it was deemed the most severe and would result in total hair loss. That depresses me to no end. It has been since April 2008 when I started to shed, that summer I was shedding all over everyplace. Then late fall, it took a rest, and the shedding stopped. About 6 months later, started up again. Now, I don't shed, but it is just over all thin. And of course the nape and around my ears is smooth. Gotta love it, right?

Comment by Susan Innes on February 13, 2012 at 4:42pm

Just wanted to say that my first dermatologist while evaluating the hair loss was not hopeful of a good outcome, almost confirming eventual universalis. One hairdresser was pleased when she saw the small white hairs but like your results Christine, the white hair would not accept a dye. The normal hair continued to recede in a circular pattern around the scalp with little white hairs replacing them; but these white areas became thinner, eventually resulting in smooth bald areas (nape of neck, extending over ears and into the temple area). I then started to wear wigs and shaved the remaining hair. (This dermatologist had said that ophiasis was the most severe type of alopecia and almost always resulted in complete hair loss; but, I've never confirmed this theory with other dermatologists.)

Comment by Christine on February 13, 2012 at 2:20pm

Hi Cokeman, the white hairs are so strange, I started coloring my hair after the alopecia go real bad, I was a blond and my hairdresser felt that rather than highlighting the blond, we should take my hair darker, well this is the really strange part, it won't take color!! at first it seems to be colored darker, but when it's rinsed out it comes, like the hair itself is so different from other hair, I have alot of white hairs in the lost areas, they never quite completely fill in, but sometimes i have tons of short ones, I would rather have them then no hair, right now I'm losing hair, and I can feel the super smooth spots all over my lower parts especially the back. I'm feeling a bit down right now, but hoping this will stop soon, and I'll begin the grow in again:)

Comment by Christine on February 12, 2012 at 11:20pm

Hi Lexi, I know how self conscious you can feel. I don't have much hair all around too, mostly the weird white hairs on the parameter I found someone who does a great job of cutting my hair, I've been using the minoxidil and continue to, it deffinately makes a big difference as far as the thickness of my remaining hair, my profile pic I was at my worse, that was a vit too short for me, I'm wearing it in a long tapered bob, I use a big round brush to blow it dry, I've found products that help too, the nioxin reflexives thickening spray works really well, it has little fibers I notice when I spray it on, Avon has a mark product called root lifter it's a liquid spray too, are you using minoxidil ? In a more serious note, not knowing you situation with working, is there any reasonable way for you to look for a job elsewhere? In our current economy I can understand where that may not always be an option, if your like me, my choices are limited, I work in the healthcare field, but I've often thought that work is the hardest as far as starting to wear a wig, it would be so much easier if you could just start with family and church and friends, there is no way people at work will not know that your wearing a wig, and it doesn't sound like you are working with mature compassionate people. Have you tried opening up to them about other things, not to personal but sensitive to know how they will react? I'm sorry that things are so difficult for you now. Right now I'm having a bad falling out spell, and always fear when it will end, always scared it won't. Hang in there.

Comment by Cokeman on February 12, 2012 at 10:19pm

Hi Christine. Yes i think you are right, the white hairs definitely werent there previously. I have quite a few white hairs now above my ears, where it was completely bald a few months ago. Very strange.. Not sure that the white hairs are anything to celebrate though, they are few and far between and they stand out alot in amongst my brown normal hair! Wondering if the area will eventually fill in with white hair or whether that white hair will ever have colour again? I guess these are just part of the mystery of Alopecia! Lexi, i do feel for you and Christine, as it must be alot harder for girls with this problem. Anyways, keep your chin up!

Comment by Lexi on February 11, 2012 at 4:23pm

Hey Christine, I can't keep mine short, no hair on the nape and around my ears. I hate it when the girls I work with are always changing their hair or talking about it. I wonder if they wonder why my hair is always the same. It is straggly being a bit longer, but I don't know what else to do with it. I wish I had the guts to wear a wig to work. I have plenty of them, and they make me feel better about myself, but several are very "catty" types, and I am sure they would have a field day. I just can't go there.

Comment by Christine on January 30, 2012 at 12:34am

Hey I wonder If people can see through the back part of my hair, it makes me feel so insecure, when I've lost too much it feels like the upper hair is away from my head a bit, and I hate it, I'll get the hebejebees when I'm sitting with my back to people, which is everyday at work. Lexi, don't worry too much about the same "do" you must have pretty long hair, mine is kept short, because when it was longer it was looking pretty thin on the ends, cutting it helped with that. most with shorter hair do wear it the same, Do any of the coworkers know about your alopecia? most people I know I've told including coworkers, I guess I came so close sometimes to wearing a wig, I knew they would know when I showed up with different hair one day. Still doesn't make it easy. Have you gotten or worn a wig in past?

Comment by Lexi on January 29, 2012 at 2:23pm

Hey everyone....haven't been on here much lately, work has got me so very busy. But keep the posts going. It surely helps for others to know that we are not alone in this strange pattern of Alopecia. I often wonder if people I work with, the catty women that they are, some of them. Will ever wonder why I only wear my hair the same way every day. They all change up their do's on a regular basis. I need to keep what I have left down to cover where I am vacant. No versatility. I am on this site today, cruising again for the perfect wig that someone actually has tried, owns, and loves it.

Comment by Christine on January 24, 2012 at 1:28am

Hi cokeman, sounds like we are very similar in our experience, I think the white hairs are Alopecia Hairs, at least that's what I call them, I had little to no gray hair when I developed this, and the white hairs are very different than gray hairs (now that I do have some) I don't think that they were always there and turned white, because I can see new short ones growing in that area too. I really lost a handful of hair today, feeling kinda bummed, I have a couple of new patches, like you I don't have much hair on my arms, but being a woman my arms were pretty fine blond hairs anyways, I also have almost no hair on my legs. I've also lost my eyebrows, I so have a bit of one left but the other is gone completely. I thought that losing body, and eyebrow hair was a precursor to AU, and has scared the bejeebers out of me for ever, but I have stayed pretty steady I'm hoping and praying that this current losing pattern stops real soon, and I start filling back in. It sounds like your doing pretty good, and glad to hear your facial hair is all there, I've learned from some guys on here that it can be really difficult to hide especially with darker hair. Is your white hair pretty much filling in the bald areas? mine has been weird as I have some really long ones, but shorter ones that I can feel but never seem to grow back in all the way??

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