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My Mystery Illness Solved

Tuesday, December 14, 2010

It's called Lichen Planopilaris.

It took five years to put a name to my health issues. Five years of unexplained symptoms, endless trips to doctors and specialists, and wild goose chases. But my persistence paid off. I finally have a name for it.

Lichen Planopilaris.

It sounds scarier than it really is. I call it my vanity illness because the major symptom is hair loss. I also experience flare-ups of red, itchy bumps on my face and neck, which can be mistaken for acne. Now, I know better.

The first sign of trouble appeared in 2005 when my hairdresser noticed my hair was thinning at the crown. She told me to go see a dermatologist. That doctor said it was stress, over-processing or hereditary and sent me on my way. Around that time I went natural, but my hair kept coming out so I found a different dermatologist who gave me steroid injections into my scalp and a prescription for Minoxidil mixed with Retin-A. I also began seeing a homeopathic doctor who gave me supplements for adrenal support and instructed me to avoid eating wheat/gluten. My hair grew back and I thought the problem was solved.

Fast forward to 2008. We move to a new city. I am stressed over moving, looking for a job and trying to get pregnant. My face erupts in patches of itchy, red bumps. I go see a dermatologist who wants to put me on antibiotics and an acne cream. I opt for an acupuncturist and my face clears up. I get pregnant and 13 weeks into my pregnancy, my hair starts falling out. I go see a different dermatologist who can't do anything since I am pregnant. Meanwhile, I am developing bald spots (alopecia).

Right after I had Marlie, I went to see a loctitian to get locs because I no longer wanted to deal with my hair. She was so shocked by the condition of my scalp that she thought it was psoriasis. She also asked if I had lupus because she had seen the same problem in her clients who had lupus. I just brushed it off because I was so tired of hypothetical diagnoses. Plus, I was still hoping the issue would just go away on its own.

But I could not ignore the problem. I saw four different dermatologist between 2009 and 2010. Each one gave me his best educated guess about why my hair was falling out...from stress to hormones to hot combs. That last one pissed me off because I have never had a hot comb used on my hair. That particular doctor was so dismissive and his "diagnosis" was based on stereotypes about styling traditions of black, female hair. I plan to write him a scathing letter, but back to my story...

Losing my hair and getting pimples at my age is a traumatic experience. The problem was getting worse in recent months to where I could no longer cover up the balding areas on my head. I was ready to give up and started looking at wigs when I read this post by Quiana at Harlem Love Birds about how discoid lupus affects her hair and skin. Our symptoms were so similar that a light bulb went off in my head.

I went back to my original dermatologist (the one I saw when I was pregnant) and asked for a scalp biopsy. He said that he didn't perform them and gave me a referral. He did notice the red bumps on my face and said that it was probably hormones and gave me a prescription for a face cream. I threw that away, but I did call the doctor's office who did scalp biopsies. His fee was $580! I was appalled.

I did an Internet search for the best hair specialists in the Dallas area who performed scalp biopsies and took my insurance. I came up empty. I felt like someone had given me a balloon and then popped it. I felt down, but I wasn't out yet. I found the website for the local Lupus Foundation which had a physician referral list. I went down the list until I got an appointment for a scalp biopsy.

I went for the procedure the day before Thanksgiving. Damon went with me. Dr. Costner took a full medical profile, listened as I recalled my history of hair loss and past treatments prescribed, and she asked questions. I was so impressed because she didn't try to guess at the cause. Dr. Costner then removed a section of my scalp about the size of a pencil eraser after applying anesthesia. She also ordered a blood draw to have me screened for lupus. I went home feeling nervous, but hopeful.

Two weeks later I went back for my lab results. Dr. Costner applauded me for being tenacious because my lab tests confirmed an auto-immune disorder that caused my body to attack my hair follicles and skin. She called its name, Lichen Planopilaris, and said it's treatable with medication. I felt a mix of emotions...relief, fear, anger. I was comforted by the fact that I finally had a concrete answer, but I was also scared about the unknown, and I was mad at all the previous doctors who didn't think of it first.

So I am now pursuing treatment in hopes of growing back most of the hair I lost. Dr. Costner warned me that there are some areas that will not have regrowth due to scarring. I try not to think that these areas could have been saved if I had received the proper diagnosis and treatment years ago. I try to focus on moving forward and making sure I support my treatment with a proper diet and staying positive. I am also seeking ways to reduce stress because I know it only worsens my disorder.

Through all of this I learned a very important lesson...Doctors are only as good as their patients.
  • You have to be aggressive when seeking medical help.
  • Trust your instincts when they tell you something is wrong.
  • Keep a journal of your symptoms and be detailed.
  • Don't take no for an answers when you want to have a test done.
  • You know yourself better than anybody, never let a professional dismiss your health complaints.
  • Challenge a doctor's diagnosis that is not based on a lab result.
  • Do your homework by researching community health sites and educate yourself so that you can have a meaningful conversation with your doctor.


Anonymous said...

I can only imagine how much lighter your shoulders must feel. We are indeed the best experts on our own bodies. Thank you for sharing your story.

jmt said...

I am very, VERY interested in your diagnosis! Way to be proactive in seeking out an answer. I have experienced quite a bit of hair loss and red itchy bumps myself, and I only went and saw a dermatologist. They attributed it to hormones, babies, and adult-onset acne. I didn't like the topical cream treatment, I didn't feel it helped. They also prescribed some vitamin B for the hair, I think, but never filled it because I found out shortly thereafter I was pregnant with Evelyn.

If my symptoms continue after I am done nursing her, I plan on taking this LP diagnosis with me to the doc and suggesting it. Although I worry that my problem isn't this for the simple fact I haven't lost patches of hair...it's just thinning, fairly evenly I think.

I hope your treatment helps you and that you can relax now. :) And I agree - hair loss and acne at our age is frustrating beyond belief!

K. Rock said...

I agree. You have to keep fighting toward a diagnosis, for yourself and for your kids, when they tell you nothing's wrong but you know better.

Glad you got some answers.

keyalus said...

So glad you were able to find a diagnosis and amazed at your tenacity in finding a way to get your test done.

Mama Up! said...

That is AWESOME that you stuck with it and didn't give up. It can be so frustrating to have a chronic condition that no one can identify - been there, done that, though nothing as severe! Good luck with treatment :)

Kim @ What's That Smell? said...

Wow, what an rough few years you'd had dealing with this!

Good luck with the treatment.

I think in general Drs aren't overly tenacious about finding the causes when the things aren't black and white. My husband has gone for years with strange rashes and symptoms and now finally he found out he has allergies to things in common household products and an allergy to nickel. HE had to insist on further treatment but it's been close to 10 years...

Help! Mama Remote... said...

I'm so glad you were deligent. That's so true how Dr are only as good as their patients. I'm looking forward to see your progress $ thanks for the information.

Rae @ Rainbows and Dragonflies said...

Glad you found a diagnosis. So many times we accept a doctor's misdiagnosis and think that nothing will ever work.

Radical Selfie said...

Indeed, Teresha, you are right about doctors being only as good as their patients! My goodness, you could have stressed yourself to no end about it, instead you remained tenacious and now you FINALLY have relief! I feel proud of you, and I'm so grateful you decided to share your story because I'm SURE others of us will, at some point, need to deal with (either directly, or through family) instances where doctors simply hypothesize, instead of trying to get to the actual issue. We'll now have your story in our mental arsenals to use as a reminder that diligence does pay off! THANK YOU!

Quiana said...

Teresha, I'm so glad I was able to help. Your list is great and hopefully more women will be empowered to get their own proper diagnosis going forward.

Anonymous said...

You know, I'm glad I'm not alone. I'm glad I have you to talk to about it. Most people don't understand unless they suffer with these same types of things. And we can suffer no more. I've embraced mine but maybe I'll go check out other options. Maybe I can get some hairgrowth going on as well. That would be awesome. Thanks again for making me feel like I'm not alone.

septembermom said...

You are the best advocate for YOU when it comes to your health and your kids. I applaud you, Teresha, for sticking to your guns and getting the answers that you deserve. I know that you'll help many with your story. Hugs to you!

Maureensk said...

I'm sorry that you have an illness and that you had to go through all of that, but I am so glad that you got a diagnosis via perseverance. Doctors are so quick to blame stress! I have had major GI issues for over a decade and though I have them controlled fairly well with medications, I do not have a real diagnosis. I have kind of given up on trying to get one. The work involved is too time consuming and tests for GI issues are seriously unpleasant...

always4evamoi said...

oh wow....wow....wow....wow...
i so know what it feels like to finally get answers to something you KNOW wasn't right.
whew girl, i know, and im right there with you emotionally.

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