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Permalink Reply by Christine on August 16, 2012 at 4:49pm

I do not have this type, although I have not had a biopsy my first diagnosis was my hairdresser, I work in the medical field myself, and already felt I knew what it was, I have pretty text book AA, with a distinct pattern called Ophiasis, I also get the distinct round peachy colored spots throughout my scalp. I have no eyebrows, in fact like you they left about 5 yrs into in (Had it for 10 yrs) I don't expect my brows to ever come back. I have lost lashes too, most uppers on one eye and all the lowers on the other, talk about being lopsided, I quit using mascara as it was making it more obvious and just wear liner now. Have you lost any other body hair, such as arms and legs? I noticed really soon after I got this most of my leg hair was gone, something that I've never complained about!! I never had much hair on my forearms but think I have almost none now, I believe I'm going AU now, the only hair that is being replaced on my head are the white ones, I have quite a few, but unlike some people mine never turn normal, some I've had for years now. No matter what the diagnosis or type of AA you have, dealing with all the losing hair is frustrating, I would like mine to all be gone, most of the time I think it would be kinder. I find mine all over too, really hate that part of it. I'm thinking of shaving and being done with the mess. Let us know what the Dr. says.

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Permalink Reply by dmf on August 16, 2012 at 6:13pm

Hi Christine,
Thanks for your reply. I have not noticed a significant loss of hair on arms and legs - and as a very pale-skinned, dark-haired woman that part is something I would actually welcome. I am very frustrated dealing with doctors trying to get a diagnosis and treatment. Each one seems to give me a different answer and the one I like and respect the most is difficult to get appointments with. I keep hearing that time is of the essence regarding treatment and yet, I have to wait months until my next appointment. So frustrating! Does it help you at all that you work in the medical field? Are you able to see doctors and/or get better access to information?

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Permalink Reply by Lori Van Decker on August 16, 2012 at 10:06pm

I can only relate a story that I experienced. I had been going to a top specialist in NYC, who eventually gave up on alopecia and turned his focus to moles.... Anyway, I was a grad student at Rutgers at the time, so I decided to see what the NJ College of Medicine could offer in terms of alopecia treatment. I wound up seeing a fantastic dermatologist who told me that I was "the second most sexy bald woman" he knew. The first was his wife. I would think that if there were anything remotely successful in the treatment department, this man would've done it for his wife. He advised me to stop the harmful steroid injections and to find a way to live with my alopecia. It turned out to be really great advice. It took a long time for me to realize that.

I very rarely reply to new people's posts, because I don't want to be Debbie Downer. All of this autoimmune stuff is a mystery and its treatment seems to be a crapshoot. While some of us who have had alopecia for many years years don't hold all that much hope for effective treatments, the new folks absolutely SHOULD! "Never give up; never surrender," to quote the "Jason Nesmith," the Tim Allen character from Galaxy Quest. If you've ever seen that movie, you will know what I'm talking about here. Just when we think they're all crackpots and phonies, something real and true turns our world around. :)

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Permalink Reply by dmf on August 16, 2012 at 10:27pm

Lori, I am very glad you replied and shared that story with this "newbie." I do not see your post as Debbie Downer-ish at all. I have other health issues, too, and I've learned through the years that coping is a process. It comes gradually in little steps. Along the way you make choices and make mistakes. You see crummy doctors and, if you're lucky, a few great ones. You find out what works for you. Right now I am trying less invasive treatments for my AA. For a while I had some success, now I'm not having much. A doctor I saw today was ready to put me on prednisone pills on the spot. I said no thanks even though I am feeling quite desperate and uncomfortable right now. I know that I'm a person who needs a lot of information before I make decisions, and I need a doctor who is OK with that.

Galaxy Quest was movie so bad it was good. It's up there with Spaceballs. Thank you for reminding me to remember to take time to laugh. You might hear from me again with questions about your past experience, if that's OK.

"Second most sexy bald woman" in that context was quite the compliment. Did you ask him to write it on a prescription pad so that you could read it whenever you felt blue?

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Permalink Reply by Ypsimama on August 16, 2012 at 11:09pm

Oh, how I know what you are feeling. I've struggled with AA on and off, mostly on, for the past decade. I've had countless spots ranging in size from a golfball to a dime with almost 20 active at one point in time, lost parts of both eyebrows (that stayed gone for years), and part of one of my eyelashes. It's been such a roller coaster, to say the least and I have tried many different 'remedies' from onion juice to steroids (internal, topical, and shots). There were times when I watched my hairs literally fall out and felt completely helpless.

Now I have significant (99%) regrowth of my hair, brows, and lashes. What worked for me: after trying multiple unsuccessful treatments, I stopped looking for a method to suppress my symptoms and wanted to work towards "curing" whatever the hell was going on. My first step was to get a food sensitivity test (this was after a food allergy test, where I was allergic to NOTHING, not even the histamine...) the sensitivity test revealed a number of foods I was 'reactive' to, which included (but was certainly not limited to) wheat, gluten, oats, sugar, coffee, tomatoes, mushrooms, lettuce??? - and many other foods that I LOVE. Cutting them out was difficult, but well worth it. I was able to get this through my local somewhat progressive doctors office and they go through this company www.foodallergy.com. It took at least 3 months of strict adherence to start to notice a difference in my hair, but physically I felt fantastic. I have to stick to it though or the darned AA sneaks in - like when I was eating copious amounts of sugar and found a nasty, quarter-sized spot at the top of my head.

I also got a blood test that measured all of my vitamin/mineral/amino acid/hormone/everything but the kitchen sink called the Nutra Eval. This revealed that I was straight-up deficient in biotin, d3, and some of the b vitamins. When I was reading through the lab work on biotin deficiency, the first symptom that was listed was alopecia. :O I've been taking large doses of both biotin and d3 to get me back in the green. My hair has immediately responded - seriously - my eyebrows/lashes are getting thicker by the day and haven't been this way since 2006. I also supplement with b complex, vitamin c with msm, and hemp oil for my daily dose of omegas (put it in a smoothie). I will also see the dermo on occasion for a steroid shot, which was useless until I changed my ways. :)

That's my story....I agree that it's a total crapshoot, but I have managed to regrow my hair on two different occasions by altering diet etc and it has been over a year at this point. Why I didn't just stick to it the first time is a mystery, but I was young and lazy.

Hope this helps and my apologies for the novella.

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Permalink Reply by dmf on August 17, 2012 at 11:27am

Thank you for sharing this info, Ypsimama. I have an appointment with a naturopathic doctor in a few weeks and I will talk to her about these suggestions. Based on my past experience with elimination diets I am skeptical about this for me, but I am glad it is working for you and making you feel good. If I learn anything new after my appointment, I will share it here.

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