So only three months ago I had a small patch, the size of a quarter missing from the back of my head. I was undergoing extreme emotional stress at work and when I went to the doctor, she expressed her concerns that this stress has triggered my hair loss and that I have Alopecia areata. A few weeks go by and more and more hair starts falling out. I finally get an appointment with the dermatologist and by this time the patch size has tripled and expanded to other parts of my head. I have started steroid treatments, and started some foam and rogaine treatments twice daily. My hair still keeps on falling out in an alarming rate. The patch keeps expanding and is now extremely difficult to cover. My hair is getting thinner and thinner; one patch turned into a massive bald spot covering most of the back of my head. It is now expanding to the front and sides of my hair. It looks less and less like patches but more like one big spot. Every few days my scalp starts to hurt and is sore and I lose hair in that particular area. At what point do doctors diagnose their patients with totalis? The doctor said there was a chance that I have this but wanted to wait to see if I respond to the treatments. It is becoming so difficult because each day I am losing so much hair.

I am curious to hear if people with areata have similar stories or if this sounds more like totalis. I know it is a waiting game and only time will tell if the treatments will work, I just need to prepare myself for what is ahead. It has been extremely difficult for me but I am staying very positive considering how fast I am losing the hair. People with areata, did you lose this much hair and this fast? Any feed back would be greatly appreciated :)

Views: 36

Comment by R0BB on July 24, 2011 at 6:24pm
Hi Missy Anne -

I was diagnosed with the areata form of this condition way back early 80's.

Ive had many "shedding" incidents thru the years all with different amounts of hairloss.

A couple times I lost all the scalp hair
Sometimes 50 - 75 %
Sometimes just one or a couple round patches
Sometimes more sometimes less..... its never been predictable or made sense.

During a shedding stage - I would also feel the slight scalp soreness you speak of around new shedding areas.
When the hair hair grows back there is also an itchy soreness .... but its funny how that never bothers me :)

A typical shedding cycle for me - with about lets say 50% loss takes about a 9-12 months total to shed and grow back to a almost pre shed condition. But , as mentioned ... nothing is typical when it comes to this Bastard of a condition.

Have a look around the site here - read people's stories , then read more. Ask questions and get as informed as you can.

Doctors can supply you with all the technical and medical info about Alopecia ..... and my thought is that HERE you can get some pretty good " From the Horses Mouth " info and advice also.


- Peace
Comment by Missyannemissy on July 24, 2011 at 8:08pm
Thanks for the insight , I truly appreciate it! I hate this waiting game and not knowing what is going to happen, I guess I have no choice but to take it one day at a time and try and stay positive :)
Comment by Nathan Paul Prince on July 24, 2011 at 8:42pm
www.AlopeciaBoy.net may have some info on it that you can bring up with your doctor, though I don't push pills on anyone - I push acceptance ;) have a great week though, and I wish you the best. Cheers from Canada!
Comment by Angie on July 24, 2011 at 11:28pm
Hey Missy,
I have A.A, since 2009. Your story sound just like mine. All my spots are closing up. I can go without my hat and scarves. Still need some thickness. I'm not getting long yet., just filling in. I did get another small spot, but it stopped hurting and it's just small. (fingers crossed). I'm not sure if it have to fill in first , then get long. I read the the hair grow in the in the same order it came out, which has been the case with me. Look for my discussion entitled" Sharing My Hair Growth" there are some of the things I do every day. May it's helpping or maybe it's time for this to come to an end.
Comment by Shelly on July 29, 2011 at 12:10pm
Hello there!

I started with areata in 1991 due to a strong and stressful emotional situation....one month later I had my first quarter-sized bald spot. I would go up and down with the hair loss and regrowth. I didn't respond unless I was getting kenalog shots (sometimes along with oral steroids). I did this for years and years and years. sometimes the bald areas were so bad that I couldn't cover them up and sought out a hair integration piece. That came and went with the flare ups.

I always knew I was losing hair after I felt an electrical pulse run through my body (from the top of my head down to my feet). I relate this feeling to driving when you suddenly notice the person in front of you has stopped and you panic not know if you'll hit them. A gal at work also feels the same type of electric pulse sensation.

I do want to tell you that in 2008 I decided to stop the shots for the summer (was tired of being a pin cushion) and I went through steroid withdrawal. It is very painful. I always asked any and all of my doctors about the steroids and how they would affect me, they all told me they were topical and not to worry since I didn't use the oral steroids regularly. Well they were wrong....it got to a point where I couldn't walk, sit or move without extreme pain. My doc tried a Z-pack to see if I could be weened from the steroids, well, by the last pill I felt great, no more pain...hurray! Once I stopped the oral steroids, the pain started again and I just had to go cold turkey, eventually the pain subsided after a few months.
Comment by Patti Clum on August 2, 2011 at 2:03pm
Hi Missy,

I have also had AA since 2009. Our stories are very similar, except that I never noticed the initial loss until I had a large bald spot the size of a softball.

After seeing 5 different doctors, I went to see a dermatologist who told me it was AA and that it was brought on by stress. I have never lost all of my hair. Typically the spots start out about the size of a dime. When there are multiple spots, they will form until they join up and become one large spot. The most I lost was my initial loss.

I still have a few dime size spots on my head today, and one about the size of a half dollar though it is growing back in. I take a natural remedy for the stress and it seem to help. Try Rescue Remedy. The Vitamin Shoppe carries it. It is much more cost effective than any medical treatment.

I found the steriods caused a whole bunch of other issues for me. I first broke out in a rash all up and down my legs and arms, and had to take an allergy medicine for that, and I was having migraine headaches, and the steriods messed with my cycle as well. I gave up on the traditional medicine and went for herbal treatment and accupuncture to help me better manage my stress. Within 3 months of changing to the natural remedy, the hair grew back in.

When I go through stressful times, it falls out a little, but mostly it has been managable. I hope this helps.
Comment by Missyannemissy on August 2, 2011 at 9:14pm
Thank you Patti, it does help. I will have to go check out the Vitamin Shoppe. There has been talk about putting me on the oral steriods because of how severe it has become but I will refuse to do that because of the side effects. I hope the injections and topical stuff in addition to a healthy stress free life will help! Its just this not knowing and waiting that is hard but I am starting to get used to it. I truly hope that this will clear up. Thanks for the support :)
Comment by Missyannemissy on August 2, 2011 at 9:17pm
Thanks to everyone for sharing their stories and giving me support :)

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