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Severe shedding for 2 yrs, losing face/body hair, stinging, itching, tingling

Discussion in 'Women's Alopecia Areata' started by marcy21, Mar 9, 2013.

  1. marcy21

    marcy21 Guest

    Hello everyone,

    I was diagnosed with diffuse alopecia areata last summer. The hair loss doctor said its not CTE because CTE only affects the scalp, and I am losing hair also at the eyebrows, lashes, pubic and nose hair. I have a constant itch on my scalp, tingling in the eyelashes, stinging on my eyebrows, then the hair comes right out. I have been shedding for almost 2 yrs now. I probably shed 250-300 hairs a day. I still see some growth on the back part of my head, but after a year and a half the growth on my eyebrows and lashes have almost stoppped and the shedding continues, so in a few weeks I probably won't have any left. Has anyone had shedding this profusely for this long? My hair has drastically thinned and now I am starting to get patches on the crown, not totally bald, but scalp shows more now. I don't read that many people who have Alopecia Areata that the shedding continues for this long. This is crippling me, its getting harder and harder to get out of bed every morning. The tingling, itching doesnt really keep me up at night, but as soon as I open my eyes, its right there. How can a human being live like this, I feel like I have bugs crawling all over my body all day. Thanks for reading, any help is appreciated.
     
  2. Din

    Din Established Member

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    Hi Marcy,

    I tried to Pm you but for some reason I cant send you aPM. is there anywhere else that I can write to you?
    And why would your doctor say its diffuse alopecia areata? Have you had a biopsy? Just because you are losing hair in other areas of your bodies does not meanits DAA. It could be CTE as well,

    let me know,
    Din
     
  3. marcy21

    marcy21 Guest

    thank you, Din, for responding, I dont know why someone can't pm me, should i change something in my profile? Yes, I did have a scalp biopsy, showed no inflammation or scarring around the follicles. I thought Alopecia Areata would show inflammation. The hairloss doctor said cte usually only affects the scalp. After almost 2 yrs, I am getting very thin on top and can see what are patches, but not completely bald, i showed this to the doctor and she says this confirms diffuse Alopecia Areata. I shed and shed all day long, it never stops, every few months it gets a bit worse. You can still see that i have some regrowth on top but lashes and eyebrows have stopped growing pretty much. I have been using rogaine since oct. and am going to start latisse soon on the brows, i'm getting desperate. do you have diffuse Alopecia Areata?
     
  4. Din

    Din Established Member

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    Hi Marcy,

    I dont know why I cant PM you, can you maybe check your settings or maybe try to PM me to see if it works??

    Do you have round patches or is it just areas of sparse hair? where did you lose the most? did you lose hair at nape of neck?

    DAA can really be diagnosed through biopsy. If it didnt show on the biopsy I doubt you have DAA. I am pretty sure it could be CTE. What started this all? did you get a trigger? I dont know what I have, probably CTE...I have no idea...but maybe its really Diffuse Alopecia Areata? What did your drem say you could do about the DAA?
    din
     
  5. marcy21

    marcy21 Guest

    hi din, when i click on your name, the pm option doesnt come up, same when i click on my name, i dont know where in my profile how to change this. it seems like i have sparse areas on my crown, mostly right side. the doctor said it is the beginning of patches, but i do see some regrowth there, although the shedding is so bad, it cant fill it in. i dont notice any at the nape of neck. four months before the itching and hairloss started i had a viral infection, pneumonia and high fever. did you get a scalp biopsy ? are you losing eyelashes and brows too? i have alot of itching and hairloss in my nose and vaginal area too. i've tried cortisone lotions ands got injections couple of times but didnt work.
     
  6. Din

    Din Established Member

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    Hi marcy is there an e mail i could write you too? I dont know why the PM is not working?

    - - - Updated - - -

    Marcy,

    write me at dinlee@hotmail.ca

    Din
     
  7. stephy

    stephy Guest

    Hi, I just joined today. Your story is very similar to mine. I have suffered from severe itching and burning in my scalp and eyebrows for 6 months. I have saw many dermatologist here in scotland and none of them have a clue. I was given steroids for scalp which just made it worse. Two weeks ago I found a dermatologist based in london who mainly specialised in scalp issues so I went to see him. After going through my entire experience and him checking my scalp he suspected scarring alopecia. I am going for my scalp biopsy on friday and should have my results in seven days. The itching, crawling and burning feeling has been awful for me. I have cried mostly every day. Even washing my hair is agony at first shampoos aggravated it now even water does. I have very thick hair but day by day am loosing it. Heartbroken doesn't even come close to how I feel.
     
  8. Chickadee

    Chickadee Guest

    The sensation that you're describing is called "formication," and although there can be many reasons for it, one of the most common is low estrogen. (I have experienced it myself.) If you are young - not perimenopausal or menopausal - then this could be a sign of premature ovarian failure or some other hormonal problem. Thyroid imbalances can also contribute. Have you had your hormones checked by an endocrinologist? You mention that you've seen a "hair loss doctor," but I'm not sure what this is.
     
  9. dancer

    dancer Experienced Member

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    Hi Stephy

    Sorry to hear of your problems :grouphug: I hope all goes well on Friday and hopefully they can help you with the pain you are experiencing.
    Best of luck x
     
  10. marcy21

    marcy21 Guest

    chickadee, i did get tested for my hormones, my estrogen was normal. i am in perimenopause.
    stephy, let me know the results of your biopsy, i suspected that i had a scarring alopecia too, but my biopsy said there was no inflammation or scarring around the follicles. i am seeing another hair loss specialist this summer, the best in my city, so hopefully i can get some answers. its been over 2 yrs now and im still losing tons of hair with that chronic tingling, itching, burning sensation.
     

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