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Comment by KarenGinny - Iowa, US on May 1, 2013 at 11:07am

Hello all, I wanted to share that I went to get a second opinion of my hair loss yesterday to a different dermatologist than my previous one. He was a bit more optimistic which made me feel better. When I was diagnosed in March 2012, my other derm did a biopsy on one section of hair and said it was FFA, and offered no other treatment and I was too much in shock to think of any questions to ask. So after a year of agonizing over it and losing more hair, I saw a new doctor now. He looked at my hair more thoroughly and said he's not entirely convinced I have FFA and may be Alopecia Areata instead, or a combination of both. He said FFA primarily only occured in women of African-American descent which I am not, but I'm not sure I agree with that since I've come to know all of you here. But he is going to look over all my previous dermatology records and then probably do another biopsy. One reason I hadn't gone back to the derm is my health insurance says they don't cover treatment for alopecia and my other appointments in the past got very expensive. But I decided I needed to go back for some answers, whether it's covered or not. A few things he did recommend for hair loss was Rogaine 5% and Biotin 5000 mcg a day. He will get back to me in a few weeks and let me know what to do next, and I feel better about him as a doctor than I did the previous one. I know the parts above my ears and forehead that are very bald probably won't grow back, but if I can save more hair on the sides and back at least it will look better in general. I'm interested in the Buffs that were mentioned, I just wonder how hot it would be, but at least I could wear one as a headband over my bald spots and when the wind blows I won't look so weird. I'm not really a hat person, although I have become one. Celia, good luck at your appointment!

Comment by Celia on May 1, 2013 at 9:29am

Paula - I rather stupidly because of security risk, deleted my inbox - you need to invite me as a friend and then I can give you directions via this internal e mail. Look forward to seeing you.

Comment by Paula uk on May 1, 2013 at 8:24am

Hi Celia,
Good luck tomorrow.
I'm unsure of how to contact you off forum site for directions.
Whenever you get a moment could you advise me.
Thanks x

Comment by Celia on May 1, 2013 at 8:18am

Hello all - I see Dr Harries in the morning and will ask him the q about DNA testing and what would they be looking to identify. I am going with rather a lack of optimism, I'm afraid, but that's partly my mindset at the moment - I will be very upbeat when I see you all though - I promise ! We are collecting Martyn's 92 year old aunt (she has a fine head of hair !!!) from near Manchester after my appt. and having her to stay for a week - feed her up, cheer her up and take her back happy - she is very lonely. Debs - I think I said a few days ago - truly every time I go to the DIY store B & Q I see at least one person with significant hairloss - even 2 cashiers and I end up nudging Martyn. Perhaps this thing has always been around and you don't notice it until it affects you personally.
Liz , I have worked with youngsters with Aspergers Syndrome in mainstream school and I am sure this must be very hard to deal with at home, cannot help your stress levels at times. I hope your school is helpful. See you soon - any other questions - I will check this website in the morning before I set off. Have a good day - sunshine ! x

Comment by Jules UK on May 1, 2013 at 8:08am

I do agree, Debs. I've just starting wearing hair bands to my yoga class and will just have to get used to wearing them all the time now the weather's too warm for hats. X

Comment by Debs on May 1, 2013 at 7:51am

I saw a woman at work at couple of days ago that most definately has FFA, I have never met her before and I decided not to approach her in case I caused offence. Her hair loss is about the same as mine (which I think is about the same as Liz) and she was wearing her hair long and up in a pony tail. Looking at her straight on was OK but from the side view the FFA was evident. I saw 2 ladies in the waiting area at the hospital the other week when I saw Dr Harries, both had FFA and were trying to style their hair without using supplemental hair. I can see that it is possible to brush it forwards and wear a fringe to a certain extent but the hair loss notices sideways on more than when you look at yourself in a mirror from the front view. Pam's suggestion of getting a fringe piece would work as would Celia's suggestion of having a fringe cut in from further back if your hair will allow. I would just say having seen these 3 ladies and their hair styles do just check yourselves out from the side view when deciding how you will manage your hairdos because from the side view the recession is more noticeable than from the front.

Comment by Jules UK on May 1, 2013 at 3:54am

Liz, I really admire you (and Debs) for putting up your photos! I find it helps me to connect with others on the forum, but I'm not brave enough to do the same yet... My hair has gone further back over the ears and the skin is completely smooth with no trace of hair left. The forehead is going the same. My hairdresser is great and cuts what's left to maximise volume with layers and a fringe. You wouldn't know I had a problem, until the wind blows! We're all so different and yet the same -does that make sense?
Have ordered a buff from play.com. They have a good selection, good price and free postage. Thanks for finding out about those, Debs.
So looking forward to seeing everyone. Xx

Comment by Celia on May 1, 2013 at 3:33am

Pam - I too have no idea why days are different - could be diet/stress or something we do not know about...... I am using the Philip Kingsley dandruff treatment and it worked the other day - I use Kerastase shampoo and also the Kerastase Bain Satin conditioner - the latter is making a difference to dryness - it actually feels like hair again ! For how long who knows ? Of to run around the gym - escape a bit ! x

Comment by PamW San Diego, CA, USA on April 30, 2013 at 6:48pm

Celia, can you determine what the ingredients are in the shampoo you tried? We don't have that brand here and I was wondering, if I could look for something similar.

Liz, there is a product called a fringe. You clip it into your hair and it covers the exact area you are missing and blends in with your other hair. it is not a full wig, just a little piece. I tried it when I was diagnosed a year ago. I have lost just about the same as you, and can still hide it with my haircut. perhaps you need to try another stylist. I switched stylists after I was diagnosed. I loved my former one, but she didnt want to spend the extra time with me to figure out different cuts, etc. My new girl has patience and works with me to adjust. If and when the time comes, I will just go with a wig because I like volume and the topper piece doesn't give me volume in the right places. I posted a picture of me wearing it on this website. I bought it when I thought I was going to wake up without hair, in a moment of sheer craziness. I am calmer now.

I had such an awful scalp day yesterday and today is totally better. I just know that there has got to be a reason why one day is worse than the other.

Comment by Liz on April 30, 2013 at 5:34pm

Hi Celia. I dont wear the hairband much, only when I want to forget about the hairloss. I wear it now several times a week and sometimes in the evening. I have a son with Aspegers who is facinated by my hairloss and not in a good way. A few days back he told me that 'it looks like a scar around your head'. I said to him 'Are you being horrible about my hair?' He looked at me and said, 'No, I'm being horrible about the bit that has no hair'. He also keeps asking if I have cancer. He thinks that losing my hair is a symptom of cancer even though I have tried to explain that it's not...And so, that is why I am wearing the headband more! And, alas, I dont have enough decent hair to make a fringe. The hair on the top of my head is thin and has gone frizzy. I asked the hairdresser and she said there is not enough hair. I may try some Philip Kingsley shampoo. My hair is so dry. I went to the doctors yesterday with itchy sore ears and she mentioned anti inflammitory drops for them or almond oil. I wonder if that would help my head.
xx

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