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Merry...

Discussion in 'Women's Alopecia Areata' started by ginawat, Mar 12, 2008.

  1. sadlady

    sadlady Guest

    Its hard not to know whats happening with your hair - for me, i think its easier to accept my hairloss if i know for sure whats going on. Where i live (Sweden) they dont do much to treat Alopecia Areata (diffuse or areata) - sometimes they treat it with topical cortisone (steroids) and perhaps injections, but thats it. I asked my doctor why they dont treat it with oral medications (like Prednisone ore something) - well, my doctor says the sideeffects are way to dangerous. I am still waiting for a proper diagnose - i did, as ive written earlier, have a biopsy done to the one small spot i have - and it shows that its an old scar with no signs of inflammation at all. I have no signs of Alopecia Areata (diffuse Alopecia Areata) according to my doctor (no exclamation hairs, no broken hairs, no smooth hairless spots - all my follicles are visible like small dark spots) - so they think its TE, and that the TE probably triggered Androgenetic Alopecia (tests show that my hormonelevels are OK - and so far i have no sign of Androgenetic Alopecia, like miniturization or something like that - so i will have to see). But since ive had some hairloss in my eyebrows and lashes (that, thank god, is getting much better by the day) - they say it MIGHT be diffuse Alopecia Areata - but its more probable to be a severe and acute form of TE. My hair loss has been going on for nearly six months now.

    For me the hardest part is really not knowing for sure. I would really appriciate if you, Gina, and you, Merry, could please share some information regarding youre hairloss with me: how long has it been going on? Do you have spots, or just diffuse hairloss? Do you get any regrowht? Is the hairloss consistent (meaning, do you loose the same amount all the time, or do you loose more in periods and less in other periods?) Do you have hairloss on other parts then your scalp (like eyebrows/lashes)? Do you have a ny pain in your scalp that started he same time as the hair loss? Do you have any parts on your scalp that have moore hairloss than other parts (i have a spot in the back of my head thats really thin, not like a hairloss spot, but the hair is really, really thin in this part). I am sorry for all the questions, i dont mean to be nosy, but since my hairloss is either TE or diffuse Alopecia Areata i am trying to understand as much as i can about both types of hairloss....

    All the best to all of you!
     
  2. Merry

    Merry Guest

    ttc ~ The first scalp biopsy I had was done at the derm department of Northwestern Memorial Hospital in Chicago. They were knowledgable in hairloss, but I was waiting to get in to see Dr. Virginia Fiedler. I think she has a couple offices around the Chicago area. I only saw her for about a year. She confirmed the diffuse Alopecia Areata diagnosis, was not a particularly pleasant woman, but has spent her career on hairloss. Except for topical steroids, (which I've never seen work), she told me there is absolutely nothing she could recommend for treatment for diffuse Alopecia Areata. Unfortunately, she was right. Dr. Arthur Gray, office in Wheaton, IL, trained and worked with Fiedler for many years. He is a wonderful, compassionate man, and while not a miracle worker, he just makes you feel better by talking with him.
     
  3. Merry

    Merry Guest

    Sadlady ~ My hairloss suddenly started almost 7 years ago. Horrible scalp pain the first few years......burning, and feeling like it was bruised. It drove me crazy. For the past 3 or 4 years scalp pain is very minor. No bald spots, no exclamation point hairs, diffuse loss everywhere but more around the ears and nape area, a sign of diffuse Alopecia Areata. I've gotten regrowth over the years or I would be bald by now. Regrowth is mostly in crown area, but top is very thin. Regrowth doesn't even BEGIN to keep up with fallout. In the beginning, I probably lost 200 to 400 hairs a day. These recent years, maybe 100 or so a day, (very, very consistent), but I've already lost 2/3 of my hair. I would NEVER count the hairs. I've lost a few "chunks" of eyebrow, but for the most part, it grew back. Diffuse Alopecia Areata is a progressive disease. At some point people often shave it off and/or wear wigs. Some have much more aggressive diffuse Alopecia Areata and don't make it as long as I have. My plan is to stay in my toppers as long as I possibly can and then shave and wear vacuum wigs.

    Maybe you should have another scalp biopsy. Do it on another area of your head. I'm sorry you haven't been able to get better answers, and I mean this in a kind way, there really isn't anything you can do for it anyway. But, if you are like me, it would just be good to know what's going on. Good luck, Merry
     
  4. sadlady

    sadlady Guest

    Thank you so much for all youre answers, Merry. I really appriciate it. I have a new appointment with my doctor in may - i shall ask him to have another look at my hairloss then, and to perhaps do a new biopsy from another part of my scalp. The strange thing about my hairloss is that its not consistent - its did start up with a megashed in midoctober last year (2007), then seemed to slow donwn some - then BANG, another megashed (in the end of november - beginning of dec), slowed down again and then another big shed in end of februari - beginning of march. That shed is slowing down right now. So - i guess it is perhaps consistent in one way - it gets better in periods, just to start up again and slow down again... Its never good - i mean, i always lose more hair than i should - i never count the strands i shed - but during a bad period i guess its about 300 a day, and during a good period somewhere between 50 to 100. Allways worse when i wash it, of course. I do see some regrowht, but nothing compared to what i shed. The worst parts of my hairloss is over my ears (which could indicate diffuse Alopecia Areata) - but this has slowed down a lot. Nearly no hairloss in my nape. The worst part is a spot in the back of my head (the place that gets thin if you have Androgenetic Alopecia i suppose), and then the top of my head. The hair loss seems to wander around, sometimes its worse in one place, then another day in another place. But its definetly diffuse. I did have some pain in my scalp (for perhaps two months) - thats better now, which im really glad for. The itching and the pain was horrible. I do use topical steroids (cortisone) - not sure if it helps, but it feels better to do something about it then nothing at all. Im also trying to eliminate the stress in my life (my hair loss started after some REALLY stressful events in my life), and to eat better. But thats kind of it. I do have a good doctor, that helps, he has reassured me that he will continue to see me and do test until he can find a proper diagnose - ive understood it takes time to get the diagnose diffuse Alopecia Areata - it seems to be so rare, that the doctors dont really belive thats what it is until theyve ruled everything else out. Right now, the doctors think im having a TE thats probably triggered Androgenetic Alopecia. I dont know.... I just keep on hoping it will get better. My doctor also tells me that if it is diffuse Alopecia Areata - it can end suddenly (like all different forms of Alopecia Areata, it can suddenly go into remission), but it might also get worse, theres no way telling which way it goes. I guess i will just have to wait and see... and hope that it is TE and nothing else.
     
  5. Merry

    Merry Guest

    Sadlady ~ (I don't like that name! lol)

    You know, my derm said that some people get more of a "seasonal" type of diffuse Alopecia Areata, so it is possible to have much more shedding at certain times of the year. That's the thing about any form of Alopecia Areata, it can be so very different for different people. But, YOU may not have it at all. I do think though, if you are having such a terrible and chronic te, that the scalp biopsy should show an abnormal number of hairs in the telegen phase. And, the best way to do scalp biopsies is to take two at the same time. Usually they do them about an inch or two away from each other. Since the Alopecia Areata is not active all ovaer your head on every single hair follicle, they have to be sure the biopsy is taken in an active location.
     
  6. ttc

    ttc Guest

    I've wondered if getting a biopsy is really worth it and makes any difference in making conclusions as to exactly what type of hairloss I have. Whether they tell me it's Alopecia Areata or TE I don't think I would necessarily believe they know for sure. In the end I would still probably be seeking the same route for treatment. I tend to agree with Dr. Redmond that pull tests and biopsies really aren't that conclusive in most cases and I'd rather not have to go through it.
    Sadlady~Are you on oral contraceptives? Do you think your shed (which sounds kind of monthly) could be related to the drop in estrogen associated with the week of taking the placebo pills? Just a thought. I take OC's 9 weeks straight, then 4 days off. The thought is it's beneficial for keeping the levels more stable.
     
  7. sadlady

    sadlady Guest

    Well - i agree, the name is not nice... i hope to be a happylady soon instead of a sadlady.... I am working on it! The hardest part is really the hair loss - just when i think its a little better it gets bad again. Today, when rubbing cortisone into my scalp i lost about 300 hairs - it sucks.... But im really happy that my eyebrows and lashes are getting better! Its stabilizing in this part - thats something to be happy about i think! I can even se some new hairs growing out. I do think i will ask my doctor to do a biopsy the next time i see him - i really want to know whats going on. Then i have something to relate to. I don not take oral contraceptives - but i do think the shed has got to do with my hormonlevels - i shed a lot more doing my period. But since my doctor says my hormonlevels are fine - well, then i just dont know what to do about it.... It been six months now, so if its TE its chronic and not acute :sobbing: But i guess i will just have to live with that. I dont cry so much about it anymore. I think im getting to the point where im just trying to accept it. I dont handle my hair with extremly light hands anymore, im tireed of being afraid of washing my hair: i do as i used to, i massage the schampoo in and i dont care if that makes more hair come out. Anyway - if more comes out in the shower, the shed during the day is much lighter. meaning i dont shed so much since the hair that was supposed to be shed was lost during washing my hair. If it continues like this for much more, i think i will do a Sinead - i just wish i was as pretty as her.... But i will not let my hair decide my happiness. I do see some more regrowht in the front part of my head - new hairs sprouting out, that are brown and healthy. But as i said earlier - its NOTHING compared to what i shed every single day.
     
  8. Janie-Ann

    Janie-Ann Guest

    Merry, this is one of the most amazing posts I've ever read on this site! (and that's saying a lot, there are a lot of very wise women here...) Your wisdom from experience really spoke to me and I plan to start using some of your suggestions immediately. Thank you so very, very much for writing so beautifully and from the heart. This is what support groups were created for...
    Warmest,
    Janie-Ann
     
  9. ttc

    ttc Guest

    I agree Janie~Ann....this post from Merry really moved me as well. I'd been considering finding a therapist to talk to and after reading Merry's post...I did and am meeting her next week.
     
  10. catfancy

    catfancy Guest

    Merry is a rock star :punk:

    Thanks, Merry!
     
  11. ttc

    ttc Guest

    a couple of you mentioned exclamation points hairs...I think I have those, new short hairs that stick straight up?? What does that indicate?
     
  12. ginawat

    ginawat Guest

    I don't think you are descibing ! hairs...that sounds like normal regrowth
     
  13. Merry

    Merry Guest

    Janie-Ann, Catfancy, ttc ~ You guys are GREAT too! It is wonderful if we can learn a little from and support each other! Thanks, Merry
     
  14. angieangie

    angieangie Guest

    Are exclamation point hairs the hairs with a thin tip? Don't all hairs grow back like that? Mine did the last time I had a TE shed.
     

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