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What do you do when the doctors dont know what is happening?

Discussion in 'The Undiagnosed' started by sadlady, Feb 21, 2008.

  1. angieangie

    angieangie Guest

    Apparently a lot of people are saying she won't in or even Obama. They think the othe guy in the other party will win. McCain? Is that the name? I'm not American.
  2. GoodYear

    GoodYear Guest

    I sure do not hope that scenario will win.
    (I am sorry for you republicans...don't want to offend anybody!!)
  3. Blue Bird

    Blue Bird Guest

    I am in the middle. Not Republican or Democrat. But I side with the Democrats WAY more. I dont want Bush in the White house and I want Hilary!!
  4. angieangie

    angieangie Guest

    I've heard a lot of people saying McCain (is that his name?) will win for sure, but I live in Canada, so what do we know about American politics?
  5. hairyape

    hairyape Guest

    erm........Billary (I mean) Hillary
  6. Deirdre

    Deirdre Senior Member

    Sep 17, 2006
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    It might be a rheumatologist who does autoimmune stuff. And endocrinologists do the hormone related stuff. But I don't think many of them know much about hair loss. And insurance doesn't want to pay for hair loss issues unless they are linked to a specific disease/ condition like PCOS or thyroid problems. My doctor coded a ferritin level for hair loss and it didn't get paid for. I told them to put iron deficiency. I guess we have to be in charge of our medical care- degree or not! Being a nurse does help - it gives me a little credibility I guess....
  7. Lee112780

    Lee112780 Guest

    yeah...Im not sure where to go at this point :(
  8. sadlady

    sadlady Guest

    So - i am back in Sweden and today is the day the specialist was supposed to call me about the tests he did (check of hormones and a biopsy). And what happends? The call gets cut of - and he doesnt have time to call me back... This just seems to be a neverending story - i dont know if i should cry or laugh. I finally got to talk to one of the nurses and she told me that the tests came back positive - meaning that my levels of hormones are OK and that the biopsy showed no inflamation, and that it is a old scar that i just havent seen before beacuse my hair used to be so thick. The specialist apparently even wrote me a letter and a i am waiting for that now. I have a new visit in two months (in the beginning of may) - and all i can do until then is wait. For now its enough to have to wait for the letter - i dont really trust what anyone else tells me - i want to se what the specialist says in the letter. Anyway - i guess its kind of good news in the middle of all: its not scarring (thank you, thank you, thank you!), and its probably TE or diffuse alopecia areata. I will have to wait and see. My visit in Goa, India, was really good - it got me thinking about other things and i started enjoying just being, in the sun, looking at the ocean and the wonderful, fantastic sunsets that Goa are famous for (at least according to the people that lives in Goa). I can really recommend going - nice people, fantastic food, a wonderful beach (long with white sand) and lots and lots of sunshine. I will try to remember the sunshine, and the ocean, and just get trough this hair loss - it will end sometime, i have to belive that. I just did not know TE could be this nasty!!!! I have lost more than half of my hair, and i have a spot in the back of my head that i just cannot hide anymore. How long does it take for the new hair to start growing in? Anyone that knows? And why ist the hair growing in so thin, whispy and blonde (i have dark hair) - that actually makes it sound more like a diffuse Alopecia Areata if you ask me... Well - i just dont know what to do about it anymore.... I guess i will just have to endure, like all of us do - take one day at a time, and hope for better days. All the best to each and everyone of you!
  9. GoodYear

    GoodYear Guest

    Hi sadlady,

    Thank god it is not scarring alopecia! Congratulations!
    Now hopefully your TE will end soon. Keep us posted!
  10. Lee112780

    Lee112780 Guest

    Maybe you are meant to be a blonde..lol
    seriously though...good it's not scarring. I havent had a biopsy done yet. I don't think I need it. I have no hair at all...so, Im positive of what I have. However, you can see the follicles on my head...and eyebrows.

    BTW...There is a women that has Alopecia Universalis that gets phototherapy at the same place I do..a nurse told me today that she received therapy for 6 months before her hair started to grow back, and ALL of her hair is coming back..a yr later.
    So...theres hope....she had no hair at all...like me!
  11. SAMANTHA07

    SAMANTHA07 Guest

  12. alicat

    alicat Guest


    What do the follicles look like?
  13. Lee112780

    Lee112780 Guest

    light brown..like I can see hairs...but not big enough to feel..that make sense?
    Im not TOO excited though because I know that I shouldn't untill I can feel it..and ...a lot!
    but...maybe it's a start!
  14. alicat

    alicat Guest

    ok, thanks :) i was just wondering what the bumpy thingies i have are.

    btw--you are beautiful :) nice pic!
  15. angieangie

    angieangie Guest

    Yeah, Lee, you're really pretty. When I try to picture you bald you still look just as pretty.
  16. ginawat

    ginawat Guest

    Did you have inflammation while oyu were losing your hair? How did oyu treat it? I thought Alopecia Universalis/AT came with no inflammation. I have a very inflammed head and wonder what I should do to treat it - - since they say evn Rogaine will irritate it.

    My follicles are surely dying and I honestly do not know what to do to help them.
  17. Lee112780

    Lee112780 Guest

    Thanks Ali and Angie! I cant even picture myself bald...I look like a stranger in the mirror!
  18. Lee112780

    Lee112780 Guest

    hm...this is tough for me to answer because I didnt see or feel any inflamation, but my Dr uses the term inflamation when he speaks about the white blood cells surrounding the follicles. I guess, according to him, it's inflamed. I tried everything under the sun. What kind of hairloss do you have? You may want to try photochemotherapy. That's what I'm trying now and like I said, it seems to be working, slowly. Either way...I would keep trying to treat it.
    Many woman (atleast with Alopecia Universalis or AT) stop trying to treat it. I hope that this doesnt happen to me because as far as my Dr is concered, if you let it go and don't treat it, the follicles will die...THIS is what Im trying to avoid. I just hope he knows what he is talking about! However, I must say it is a pain in the butt getting PUVA treatments twice a wk...a reall hastle!! BUt if it works, Ill do it. I swear I go to the doctors so much because of this disease...it is like a PT job...Im so tired already!! Sorry..Im rambling...Im just annoyed. Im sick of going to the friggen doctors!
  19. Lee112780

    Lee112780 Guest

    How are the eyebrows?!!
  20. ginawat

    ginawat Guest

    I wish I knew what kind of hair loss I had. My hair just falls out - diffusely - mostly crown and sides (above ears) I lose long and short hair. My scalp is itchy, stings, hurts, flakey..irritated. This has been going on for just over 8 months.

    Will they do PUVA for hairloss? I thought just psoriasis?

    What about tannning (UVA/UVB)?

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