Alopecia World
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Officially diagnosed now
I was diagnosed over the internet through photos I sent, but today I finally saw a specialist in Paris who told me what I already knew.
When I got off the train this morning my stomach dropped - I was sick and scared- even though I knew I was just going to get a confirmation.
However she was so nice, and so calm and undramatic about my hair. She didn't prescrible anything internal to take (I am grateful!) - I am only going on Minoxydyl and topical cortisone treatments. Then she wants to do more exporatory bloodwork to check out the autoimmune factors, but even there she was very mellow. And she took her time, which apparently she does with everyone b/c she was running an hour late...
So here I am on the train home, and the only real "issue" now - ridiculously minor - is she said to leave my curly hair curly. No more Brazilian straightening - she even said this could be what caused it - at least partially!! Crazy crazy. No more blow-drying it to straight. But I can keep the highlights. She said to treat my hair as if I were African, with cocoa butters, and oils, etc. I like that (and no I'm not African, and I can't say African American b/c I don't live in the States.) She says she is seeing more FFA b/c of the straightening, especially among Africans. You may not think about it if you've got straight hair, but there is a real pressure for us curly-heads to fit in - I grew up with my mother always saying "what are we going to do with your hair???" It's a THING, and it effects your image, and who will hire you - everything.
So I will be a frizzy-haired Who (as in my screen name) and we will see how it goes. It may be a pain to rub crap in my scalp every night but there are much worse things.
Oh - and no more nail polish (eczema). Continue AIP diet but watch for vitamin deficiency. And voilà that was all. I feel lucky, relieved, and again, grateful. Will my hair continue to fall out? Je ne sais pas (I don't know). She said it could stop, that it seemed to be slow (since the loss has been over two years) and it was good that I came in now.
So again, the only thing a teeny bit worrisome is the underlying autoimmune "something".
So I'm glad I went.
- Half Baked Who
Replies to This Discussion
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Permalink Reply by illustr8r on
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Hi there-
My dr ordered an ANA test looking for an AutoImmune answer to my hair loss (Lupus). It came back positive for scleroderma antibodies. So, I went to the rheumatologist for more tests and they all came back negative. Having this kind of blood work done during a raging flare I guess can make the alopecia appear as a positive ANA. So, if there are more tests keep this in mind and don't stress before you know-as stress just makes this mess worse. Hang in there!
I have always had straight fine hair and was envious of big bouncy full curly hair! So, embrace the new you! Try to stay positive. I know it's tough. -
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Permalink Reply by Halfbakedwho on
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Thank you! I feel like I'm in good hands in this specialized hospital unit for skin and hair conditions. She knew what it was immediately, and like I said, didn't overreact with a lot of meds. My curl is very (very) damaged from years of blow-drying and straightening. I've been looking at Youtube to see how to get it back, but it may take a long time. It's far from the "big bouncy full" I had about ten years ago-ish. I am trying to stay positive, thanks for your encouragement.
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Permalink Reply by akb on
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I'm really interested in your dermatologist's suggestion that straightening your hair could cause FFA! I've only had my hair straightened twice in my life -- and i don't even own a blowdryer--but how do you think this works? I know all sorts of hair processes and/or products can cause alopecia areata, thinning, or traction alopecia. And I could see how straightening might damage the delicate hairline hairs, but in a progressive and scarring way? I've been wondering a lot if I caused this somehow with my tendency to try a lot of different shampoos/hair products/no-wash regimens and also experimenting with various scalp treatments for my chronic dandruff.
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Wow, I don't know - but I do know that I started to notice my hair loss two years ago, and it was about that time that I started getting Brazilian straightening - once every 3 to 6 months. At about age 45 my curl just "died" on me - it looked like limp frizz - and then I chopped it all off (bad idea) then, I started the straightening. I didn't want to make the connection because I really prefer my hair blown-out and it looks a lot more professional - but that's just me being a princess. In a way at this point, for me, it doesn't matter what started it, but I have to slow it down or stop it now. I may just wear my hair attached in the back while I "fix" it - and the front is covered by my bangs and some long pieces. I'm sure the chemical soup we live in now isn't good for us - and possibly we are more sensitive than other more hardy mortals. In any case - I think it's interesting that the body will rebel if you try too hard to push it against its nature - who knows what extreme teeth-whitening or Botox or whatever will do in ten years? Gel extentions, etc etc - none of it can be good (though I did cave and go for Botox last year, and get occasional gel manicures). So yeah I am a bit of a hypocrite-narcissist, but trying to recover, ODAAT. (Lol) Can't a good dermatologist help with the dandruff? That's no fun either...
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Ok ten days later, and I think (am I paranoid) that I see new holes in my hair - above my right ear, and on the top of my head. What's crazy is how my mood can go up and down with this. Sometimes I have a decent equanimity and it doesn't affect me, and sometimes I feel entirely freaked out and I'm harboring a demon-being bent on destroying my immune system and killing my hair with fire-fingers that burn follicles from the inside out.
Yep too much imagination. But it does get scary sometimes, doesn't it... Why would our bodies do this? What's the point?
Thanks for reading my vent. Have a decent, good August day. -
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sorry to hear that you have now noticed new missing areas. do you still have the itchy scalp as that is a sign that it is still active. i've had mine for about 4 years now and it's like a slow death.. it did slow down with the aip diet and also my blood work went from having positive antibodies to negative over the past couple of years after starting the diet. my most recent was also negative. i guess negative to autoimmune? not sure exactly what this means as i didn't get into it with the dr. but will do so at my next apptmnt. most of my missing areas are around my ears and top of my head although diffused over whole head. i wear my hair long so i can still cover up the spots depending on how i part my hair along with also using the powder in areas that i can't.
i try not to think about what next year will bring since i am not comfortable with wearing wigs/falls or even hats.. thinking positive kind of although right now i am feeling depressed. tomorrow is another day.
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What happened to my post!? I just saw that only the first letter appeared- grrrr.
Anyway, I had written a reply to you Halfbakedwho- saying Vent Away! I have done more then my share and it helps a lot, as trying to explain what we are going through to someone who doesn't have FFA or know about it, can be somewhat of a lost cause and doesn't help much :-( so as I said, vent away! PS, I like your crazy imaginary demon :-)
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i'm with you. most people just don't get it. it's only hair loss... blah blah... the only way anyone gets it would be if it was happening to them. all the best!
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i am the same. one day i feel "almost" normal, others i am also very paranoid and pissed off! your description of that demon destroying our hair follicles is quite amusing and scary all at the same time. I want to kill it for killing me or parts of me... It has control over me and i don't like it, or i should say i HATE it. my life has changed and i feel i can't do things i want to do because of embarrassment or feeling week. i have been strong and healthy my whole life. always working out with weights keeping my muscles strong, but this just weakens mentally and affects me physically. still trying to work out when i feel good mentally. i will atleast keep the rest of my body as healthy as i can for now. :)
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