Comment by Heather L on June 9, 2009 at 11:33pm

HEY Kindred spirit! I KNOW exactly how you feel! You have just described the last 5 years of my life with AA. I will have a spot or two- treat them with steroids...get great re-growth... a few months go by and I start to feel confident that just maybe this time will be the last time! Then the heart sinking moment- I'll see another new spot starting. Actually your blog made me tearful- b/c I can feel your sadness and frustration- I'm there with you!

"spot watching" is so emotionally exhausting!

About a month ago- in the mirror before bed putting on my steroid foam - I felt that ominous itch in the back of my head and was afraid to look! But did- and sure enough a tiny little spot starting- It just took my breath- and I cried saying to myself " I cant take this anymore!" ugh. But there is always a new day - and some how just keep trying to focus on all the blessings in life.

Wish I could tell you if it will ever stop... a million dollar question! All I can tell you for sure is that you are not alone- and if you ever want to chat- I'm here.

Heather

Comment by Jeweli Due on June 10, 2009 at 7:18am

I have lived with AA for over 12 years. Started at age 29. Grandmother had lost all her hair at age 14 to which she had no re-growth. I was 1/2 bald by the time I got into a dermatologist, due to Doctors non referral. Read my profile...I look back now and it's rather a funny story of how I finally got an appointment with a dermatologist.
Kenalog has always worked for me. My suggestion is to get injections immediately! Unfortunetly, this is a lifelong illness. Fighting it is tough and it may not go away. Stay confident and strong with your treatment. If it's not working, discuss it untill you feel comfortable with the answers you get. Always have someone check for a spot to catch them early. The faster the better. If you do not have faith in your doctor, I suggest you find a new one. This will give you all the confidence in the world! It is an exhausting disease, but the more faith in the treatment you have, the faster the re-growth.
I also suffer from a rare autoimmune disease called Langerhans Cell Histiocytosis. I was diagnosed seven years after my first AA incident. Alopecia can sometimes be caused by LCH of the scalp. I was never tested, as the disease is so rare. I wonder if the AA was just a hereditary thing, autoimmune thing, or just a fluke. I do know that my spot has a tendancy to come back when stressed. I have become confident that if I get a spot, I can get it FIXED. My fear and stress are almost at a nil, even though I go in every 2 to 3 years for treatment.
Keep your head up straight. Had terrible headaches, neck and back pain when left side was completely bald. Tilted head all day, and the put my spine in a whack. Felt like Donald Trump...the comb over of my thin hair was just not enough, even with a hat on. Still part my hair right to left, just in case...HAHA.

Comment by Jamie A Root on June 10, 2009 at 7:58pm

I was aa at 3 years old all my life I would feel frustrated every time my hair would grow back then fall out again.Did the steroid shots rogaine vitamins acupuncture Ive tried it all.

Comment by Joshua on June 10, 2009 at 8:58pm

Hello,

Unfortunately, the most frustrating thing about alopecia areata is unpredictable, the unpredictability is the only predictable when comes to alopecia areata. Even after more than 7 years of shaving my head because of alopecia universalis, I still check and count my few regrowth on my hair brows, never more than a dozen in any regrowth. As for my head, there're still a couple dozens of strands scattered across which "cost" me sometime everyday to make sure that I have a clean shave.

I have written a series of article on alopecia areata at my blog you can visit them , the first article started on February 17th.

Hope, you'll find it helpful. Take care and God bless.

jt

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