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Comment by Cokeman on June 3, 2012 at 7:47pm

Comment by Cokeman on June 3, 2012 at 7:38pm

Small update for you guys. My ophiasis pretty much went dormant for the last 8-9 months and i stopped losing hair on my head. Quite a bit of fine regrowth, all completely white and more annoying becauise the white hairs stick out from under the coloured hairs and you have this perimeter of white. Kept losing hair on my legs though, they are nearly bald! Anyway, it was fine becasue i could still hide my bald spots.

Anyway, in the last 3 weeks i had some patches appear on the back of my head. These patches became very hard to hide in quite a short time, and so i made the decision yesterday to shave my hair off. I understand that as a guy, this decision is a lot easier to make, and i feel for you ladies because it must be a LOT harder.

Anyway, i will keep you updated as to the loss, and i'll post some photos of my cranium so you can see my pattern. Hope everyones holding up ok!

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?

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