Can you guys tell me what you think?

I've had a pretty terrible experience at my last two visits at my derm. I've been losing hair now about 4 years and my hair line has definitely receded. This derm was condescending and made me feel like I shouldn't even be there. She's supposed to be a specialist in women's hair loss!! I waited a year to see her the first time! I thought I'd give her another shot but it wasn't good. I waited an hour and a half in the waiting room. So by the time I got in there I needed to be able to pick up my daughter. She said I could get a biopsy that day and if not that day, I'd have to wait another four months! So now I'm waiting because they forgot about me in the waiting room! She also told me it was up to me what kind of medicine I wanted her to prescribe me. What doctor says hey it's your choice! I didn't know what to do! Can you take a look at these pics? She says my hairline looks "fine" and some of her other patients would love to have my hair. Made me feel like crap! She also said your hairline can recede with female pattern hair loss. Is that true?
I've lost all baby hair on just one side of my head. Eyebrows are still in tact but are somewhat thinner. My recession keeps moving back but I do have diffuse hair loss. I have itching and pain daily on my scalp for over a year now. She said the itch and pain is not related to hair loss. That is weird! I was surprised to hear her say that. I sure thought it was! There are days where it feels like my hair is dying! My scalp is not red or dry looking. She says it looks normal. I don't know how much you can tell from these photos but any help would be much appreciated! Thanks in advance!

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Permalink Reply by momto1 on September 30, 2015 at 4:39pm
Mine looks similar in the front. But because I have diffuse hair loss too and my hair is so thin on top the shorter hairs in the front are not as noticeable. They are there though. They almost looked like regrowth to me but then realized it was just my hair line disappearing....it's funny to me that so many people use rogaine on this site. I specifically used it in front for over a year and I think it made my hair line soooo much worse. I guess I am doomed. I have a new appt with a new derm later in October.
Permalink Reply by Alice on October 1, 2015 at 4:02pm

I think most derms focus on what the follicles look like, rather than just the hair loss.  My follicles at the front, where the biopsy was taken, look enlarged and inflamed. I noticed that before I noticed the hairloss but didn't think it was significant. 

Permalink Reply by momto1 on October 1, 2015 at 4:50pm

I actually feel like most of my follicles look totally normal and it's difficult to see any scarring. The skin on my forehead looks normal too. Sometimes I think I can still see hair follicles! The skin is white...at first...where my hair line recedes but it does seem to get color once it is exposed to the sun.

But my hair follicles do not look inflamed to me at all. But that is where the hair seems to be disappearing the most...right at my hairline. Lost 2 to 3cm so far. The derm didnt seem to think follicles look inflamed but to my understanding you can still have FFA with out actually seeing the inflammation at the follicle, right?

Permalink Reply by MJ on October 1, 2015 at 5:19pm
I don't have any visible inflammation and haven't since first diagnosed.
Permalink Reply by Lo on October 1, 2015 at 7:00pm
MJ, do you have a lot of loss? I have never had a lot of inflammation or symptoms and lost a good bit at ears and temples before treatment. Now I am on Celcept and doc tells me it is reducing pinkness in scalp at forehead (it was slightly pink) and hopes that stops the loss. But that is the frustrating part (among others)... The symptoms subside but the hair loss doesn't??
Permalink Reply by MJ on October 1, 2015 at 9:12pm
It has been almost two years since I first noticed the little balding area on my upper left temple, which is the area with the most loss, probably an inch back and that is the only really shiny area. I have probably had a total of 2 cm back on the top and right side and only a bit of thinning on the sides. I am still able to hide but I believe the loss is continuing even without symptoms and with treatment. It is just that it is very subtle. I am due back for a check up and I think the photos will show change since last spring. Up until then I was considered stable.

The only visible signs are white skin where the hair is gone and occasional flaky scaling build up in the areas I use rogaine. I have to occasionally use fluocinolone acetonide treatment which resolves it. My temple hair is thinning more on my right side now. I try not to obsess but have bouts when I take a close look at my hair line, which I try to avoid, and then spiral into obsession with all things hair. Ugh. Kind of in that moment now, wondering when it will stop.
Permalink Reply by Lo on November 3, 2015 at 2:28pm

Hey, MJ.  I wondered if you went to your derm for a check up.  You mentioned in your last post above that you were due back for a checkup, so curious what was said/discussed.  Hope all is well - Lori (Lo)

Permalink Reply by MJ on November 5, 2015 at 8:40pm
Lo,
I have not been able to an appointment. I am considering taking a new approach. I have heard of a chiropractor who specializes in autoimmune disorders and put a call in for a consult.
MJ
Permalink Reply by MeganG on October 5, 2015 at 6:23pm

I am so sorry to hear about your frustrating visit to the dermatologist. To help ease the frustration, I have a couple of thoughts. One, check with your insurance - you may be able to appeal the charges and not have to pay the doctor for that visit, especially seeing that nothing productive resulted. The appeal process may take some time, but in the long run, it will be worth it because it will send a message to the doctor. I get so tired of dermatologists not taking alopecians seriously and partnering with us. 

Second, I do recommend you research and find a dermatologist to conduct the double biopsy. When I was first diagnosed with alopecia, I only had a single biopsy. The dermatologist diagnosed me with alopecia and sent me on my way. I had no idea there were so many types, and I was 21. I felt very much alone and afraid and overwhelmed. Ten years later, I finally gathered the courage to see another dermatologist who did the double biopsy and diagnosed me with androgenetic alopecia. My scalp hurts and itches ALL the time. These awful bumps erupt on my scalp but never produce anything like a pimple would. I've tried all types of shampoos and lotions and skin care products without being able to completely resolve the problem. What keeps it the most calm is using Cetaphil twice a day. I also shave what hair I have left because I wear a Freedom Wig. I use a Headblade for shaving.

I hope this information helps and that you find answers to your questions soon. Good luck!

Permalink Reply by Lauren on November 5, 2015 at 2:04pm
So your hairline looks a lot like mine. It's not noticeable to others but you definitely notice it because you know how your hair used to be. I was, ok still am, obsessed with this and was taking pictures and comparing old and new pics until I got the diagnosis. I will even admit it is hard to tell in pictures, mostly because all he before pictures aren't focused and up close of the hairline. But I can tell you I knew something was different and I went to three dermatologists before the third one was like yea it looks thinner than it should be. She did the biopsy, just one in front where there was a small area of no hair. This confirmed it. I haven't been back since they called me with the results. I am so relieved to have the results yet part of me is wondering if it's totally accurate because they haven't explained to me how they came to the results, silly I know but I question everything. I know exactly how you feel not knowing and just wanting an answer. Find another doctor who seems to have some compassion and understanding before you do the biopsy, you definitely want them to do it in the right spot so someone thT has knowledge of this disease would be the best! Keep us posted on how it goes! Also, I know this is easier said but try not to worry because I think we notice our hair loss way more than anyone else does because we are so acutely aware of it and we see it as bigger than it actually is.
Permalink Reply by Lo on November 5, 2015 at 3:10pm
What were you ultimately diagnosed with, Lauren?
Permalink Reply by Lauren on November 5, 2015 at 7:09pm
Oh I'm sorry, I didn't even say. It's FFA.

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