New here

I posted this in one of the groups but I will post it here too

Hi I am new here. I will give some background. My brother was diagnosed when he was 10 with alopecia and it turned into AU. He has tried treatments but nothing ever worked. Fast forward 23 years and I noticed a spot in the back of my head. It slowly got bigger. I knew what it was but I was so afraid. Finally went to the derm. She wanted to do a biopsy but I figured why I knew what it was. Started with creams, and eventually started the injections, they were working great, and then all the new growth fell out. I am missing about 2-3 inches, probably more like 3-4" along the base of my neck. She finally did a biopsy last week and it is confirmed AA. Since then I noticed more spots, a larger one over one of my ears and a few smaller ones over the other ear. And a few around my temples now. From readi it seems like I have Ophiasis. I am scared. I watched my brother go through this and I know how scary it is. I have always had super thick hair and luckily it is enough to cover right now, but I am worried for how much longer. I love my dermatologist she is so sweet. I wanted to find someone who specialized in alopecia but really what can they do for me? I just started a ton of vitamins, I know it won't do much but feel like I am doing something. I was going to try going gluten free, but don't want to do too many changes at once. I am so depressed over this, and don't want my kids to see me sad. I am also worried will they get it.

I am a mess to say the least. I spent most of today crying. My husband is amazing and so supportive as is my mom who comes to every appointment and holds my hand.

I started taking a multi vitamin, B6, biotin, flaxseed oil, primrose oil. I also know my ferritin levels are way too low but I am worried about taking the iron. I SMS seeing a new md next week who is great with vitamins and will talk to her about how to get the levels up I know that one is important. I also went for a full blood work up on Friday too.

Thanks everyone, glad I finally decided to post. Today was just a bad day.

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Permalink Reply by Tracy on May 16, 2013 at 4:27pm

I also worry about my child getting AA. I am sorry you had a bad day, bad days are never fun. I have had AA for 17 years. I guess "luckily" I have been able to hide it for all of the 17 years, well for the most part anyway. I am tired of hiding it. I wish you luck with your Alopecia, I know that there will be bad days to come, I hope that you find more good days however.

Permalink Reply by Christine on May 18, 2013 at 12:05am
Hi. I'm sorry to hear about your hair loss. Alopecia is an absolutely devastating disease. I have the opposite situation: I've had AA since I was 3(I'm now 43), and one of my brothers was diagnosed a year or two ago. I'm pretty sure he was as nervous about going to the doctor for diagnosis as you were, because he knew what it was, and has watched me try to deal with it for a long, long time. I'm glad you found a doctor you like, but you may find vitamins and diet don't work (please let us know if they work for you!). I hope your doctor has told you all the treatment options you have, like the kenalog shots, because, as you probably know from your brother's experience, the faster it's treated correctly, the better the outcome of the treatment. In the meantime, if you need to cover any visible spots, I use Topik, which is a colored crushed wool powder that you apply daily. You can get it a some beauty supply stores or online, and it comes in all colors. I have found it to be a small miracle. I have been reading posts here for awhile, but have just started to speak up here myself, due to yet another bad turn. I'm so sorry you had a bad day, but I'm glad it led you you to post here. I never want to hear about someone getting this, but at the same time, reading about other people going through the same thing helps me get through the tough days.
Permalink Reply by AK13 on May 18, 2013 at 12:21am
Thanks Christine!!

I haven't really asked about other treatments. The shots were working, but then I lost all of the new growth and now have all new spots. Are the kenalog different from steroid? I am going on Monday I will ask her. She wanted me to take last visit off from the shots she knew I was feeling defeated. Coming here and reading is definilty helping.
Permalink Reply by Christine on May 18, 2013 at 9:44am
No, the kenalog shots are the steroid shots. In my experience, they only work when the doctor treats aggressively for at least three visits, at four-week spacing, not six. The best results I've ever had we're from a Dr. Samuel Moschella, who went at my head and brows like a pincushion. Unfortunately, he no longer treats, and I haven't found one single other doctor who is willing to treat my problem so aggressively, and I've seen a lot of doctors. They all seem worried about causing depressions (and in some cases, if you can believe it, messing up my hairstyle!), which, once again, I only speak from my experience, is when my hair comes in and stays in. Please do your own research, Google away, everyone reacts to each treatment differently. Try the Topik (there are also other brands, but that one is easily available to me), it can make a huge difference in your confidence. Believe me, I know how hard this is, but don't let it get you down, and remember how many of us are out there, just like you. Best of luck at the doctor, and do your research.

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