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Permalink Reply by Pam D. on June 16, 2015 at 5:16pm

What I have learned is that everyone's experience is different. I was diagnosed with AA 3 years ago at 58; if there was a trigger for this, I can't think of one...I'm retired, healthy, my daughter is grown, my parents are doing well (for old folks), no financial worries. I have lost my hair three times...the AA is now AU and I'm not sure if it will come back a 3rd time. A doctor told me there is a gene for this, my 90 year-old-father just developed some spots, so I think I got it from him. You may have gotten it from your mother's side.

I have had steroid shots; not sure if they worked or if the AA was going dormant when my hair came back. The shots did not work on the 3rd round of activity. I have tried various "remedies" people said worked for them. I now think what worked for them may have been temporary; nobody claiming success has ever come back w/an update (as far as I know). Or what works for one may not work for someone else. This is a very frustrating, fickle, condition. I am on Plaquenil now; I'm not seeing any results other than my top eyelashes trying to make a comeback. It's only been a month and a half; the doctor said to give it 3 months. There are some "sprouts" as I like to call them, but certainly not anywhere near the forest I'd like to see, but I am a little encouraged because the new sprouts aren't falling out like they had been.

I wish I could give you encouragement, but I don't want to give you false hope, either. This condition is different for everyone. I believe nobody knows the cause, they just have theories; it happens to people of all ages, and we all go through different ways of dealing/coping/accepting the condition. Personally, I accepted it and was ready to live life as a bald lady, then my hair grew back. So, I had a couple of reprieves, now I don't know what is going to happen, and I'm fine w/it. I can think of a lot things I could be dealing with that are painful and potentially deadly; I feel lucky, in fact.

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Permalink Reply by MTgirl on June 16, 2015 at 5:26pm

Pam - thank you for the reply.  What advice can you give me on how to cope/accept this because I am struggling big time.

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Permalink Reply by Pam D. on June 16, 2015 at 6:35pm

I have never been the kind of person who worried about things I had no control over; I was just happy it wasn't something worse. Sometimes I think things like "what would I rather have, than this"? I can never come up with an answer...cancer? diabetes? ALS? lose a limb? (it has to be something terrible to be meaningful). Or, who in my life could I do without or what would I give up to get my hair back? my husband or daughter? one of my horses? sewing? gardening? is it worth giving up something or someone I love if I could get my hair back? When I think of the things that really matter, my hair seems unimportant in the overall scheme of things.

Coming here, I see how this condition affects everyone differently. Some cope better than others; some can't cope at all. My heart goes out to those struggling with this condition.

This condition puts us on a roller-coaster ride we never wanted to get on in the first place. I wish you luck.

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Permalink Reply by carebear42 on June 17, 2015 at 12:41pm

My father and sister both have AA, my father lost all of his hair in elementary school but it came back and he now has male pattern baldness.  My sister started getting spots in Grade 12 that came and went.  One time she was getting spots and was so upset about it, she got more and more, but they also grew back in.  She  now gets them but tries to ignore them and they grow back in.  I first got one in 2012, I had a major tooth infection and a close friend of mine passed away, not sure what triggered it but it grew back.  In Jan/Feb of this year I noticed a spot on top of my head toward the back, never bothered me at first but then it kept growing.  I went and had steroid shots done in early April, and the hair around that spot fell out like crazy (and still is), however I had white fuzzy hair come in the middle of the spot where it first fell out and it turned dark brown (my hair color) after and is about 1 cm long in places.  I now have white fuzzy hair on the other parts of the spot as well but as I said the hair around is still falling out.  I spent so many days crying and so many nights laying awake searching for answers, buying  vitamins, drinking protein shakes.  Finally I bought a wig, I went to a very nice lady at a salon who was a tremendous help, the wig has given me confidence again and I feel good about going out in public.  I read somewhere on the wonderful internet that any hair loss treatment can cause hair to fall out, and when the hair starts to come in, the old hair will be pushed out and new will follow ( I don't know how true that is ).  It is a struggle, I am thankful that I don't have something that will take me away from my children or husband and family, but it is hard watching the hair fall and not knowing what is next.  I do believe because I worried and stressed so much, it made my condition worse.  I can't think of anything other than stress at work that may have caused my hair to fall out this time but I also had another tooth infection like the one I had in 2012 and had the tooth pulled out  a month ago.  Good Luck to you.

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Permalink Reply by MTgirl on June 17, 2015 at 12:46pm

carebear42 thank you for the reply.  If you do not mind me asking did you have any fingernail changes?

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Permalink Reply by carebear42 on June 17, 2015 at 12:56pm

No I never noticed any changes with my finger nails, except that when I started taking biotin they grew faster.

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Permalink Reply by nappylee222 on June 17, 2015 at 2:33pm

Hi MTgirl,

I'm sorry that you are going through a rough phrase. Honestly, there isn't a predictable outcome for AA.

I, like you experienced a small spot and received injected. When I noticed it again in Dec it actually doubled in size along with clumps of hair falling off. At that time I didn't notice my nails but did start taking biotin. To date I'm bald w/a wig and my eyebrow is thin and light. Although I don't have pitting in my nails I do have what seems to be Lindsey or Terry's nail according to google's nail symptoms. However, my last report shows that my kidney and liver is functioning well. (My next blood repeat is end of July). Currently, I have stopped injection since it was denting my scalp. The only thing I do take is supplement which consist of Vitamin D3, Biotin, Black Currant Oil, and Cod Liver Oil. Hair is growing but at a slow rate. Some is coming in as White. My doctor did recommend a gluten free and diary free that I have been on since Jan. I alternate btwn gluten free and reg. meal.

The thing is, most doctor suggest that stress plays a role in AA which I do agree to a certain extent but I think genes also play a role as well. I say this because I had this at a young age but not to this full blown extent. As a child, I wasn't stress or sick but AA struck me at 5years old and again in my early 20's.

I have a friend who recommend going to acupuncture which I have yet to try. This is something I do think down the road.

Give naturopath a try. No harm.

I wish you all the best. Remember don't give in to negativity. Stay busy and focus. When you do so it's as if AA doesn't exist.

If ever you need to chat, feel free to msg me.

nappylee :)

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