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Feedback about your experiences with doctors and nurses when first being diagnosed
Hello there. I am wanting to hear some of you or your child's experiences with doctors and nurses that you are willing to share for an upcoming dermatology conference I will be speaking at. Please share your good and bad experiences, what your expectations were when you made your appointment, how long it took to see a your doctor or specialist if that applies, and anything else you wish. Thank you in advance. I appreciate all your help.
Replies to This Discussion
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Permalink Reply by Kelley on
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I lost all my hair about 12 years ago. At the time I was told to not worry that my hair would grow back. I was dismissed about my fears and what I now know. It doesn't grow back. In the 3 different states I have lived in since my initial loss I have learned to live with it. The medical community is not helpful or knowledgeable about alopecia. I am ok but I feel bad for the. Hildren
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Permalink Reply by Rascalx2 on
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I agree, I try to see that I was fortunate to keep all my hair until I was 44 but I am saddened for children and teens and younger adults having this.
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Permalink Reply by MiamiHeat on
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I had Alopecia since I was 10. I'm 37 now. I started with patches here and there, even sometimes my hair grew back completely, then falls out again and so on. I just learned to live with it. Always battled with allergies also.
Being bald, I was ok with it, shave my head in the morning and Im good to go. Sometimes in November, all of my hair fell out. Everything. It happened over like 7 days period. Everything. Eyebrows, eyelashes, beard. This time, I got really depressed....I just wanted my beard and eyebrows back. I went to see a dermatologist at University of Miami, at one of the best hospitals in USA. I heard from a good friend of mine that also works at University of Miami Hospital about Dr. Antonella Tosti. She is one of the best dermatologists that specializes in Alopecia. Her team gets a lot of funding(one of the most funded departments in US) for Alopecia research.
To see her, I had to wait like 7 months. She is super busy with patients and research...so I scratched that off and scheduled with Dr. Morrison, same dept as Dr. Tosti. I was super excited because he said that they are doing research on this every day and they are almost finding a solution to our problem. I started getting Cortisone shots in my eyebrows and after 2 months, they are almost back and they are not failing out!
He prescribed Squaric Acid for my beard, which I apply twice a week. Hair is slowly growing but its white. Lets wait and see....Im optimistic!
To all of you out there, be patient, don't stress, keep your head high and be positive! Love and peace!
D. From Miami
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good to hear man.
this gives me hope
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Permalink Reply by Sad1995 on
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Squaric acid and intralesional steroids only work for 50% of people. Xeljanz and jakafi is what we all need.
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Permalink Reply by Melissa 74 on
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It was 1986 and I was 12 years old. My mom noticed my hair line had receded behind my ear. She took me to a doctor who said I twisted my hair with my finger and broke it off. I told him I didn't twist my hair and he told me I did. He told me it was a nervous habit and I just didn't realize I did that. He also told me not to wear banana clips (remember those)?. Luckily my mom thought he was a quack and she took me to a dermatologist. He immediately suspected alopecia and referred me to a doctor in my neighboring state Dr Janet Roberts. She was ahead of the game back then. She diagnosed me with alopecia areta. I spent the next year getting cortisone injections in my head. 22 shots every month. They didn't work. Next she talked to me about something I could rub on my head and that it would burn my scalp and it may or may not work. I tapped out. I had, had enough. 31 years later and I have never seen a doctor for it again. When I was 30 and pregnant with my first child, I lost all my hair. Starting at my eyebrows, then my lashes, then lip hair and it continted to fall out down my body, from top to bottom ending with the hairs on my.big toe. Skipping my armpit hair which was honestly a bummer lol. But also so weird that it literally fell out in phases from top to bottom. When I was 35 and pregnant with my second child there went my armpit hair....so weird!
I am still thankful my mom didn't listen to that doctor. His practice was if he didn't know the answer he'd make one up.
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Permalink Reply by Deeann on
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Melissa: Thank you for responding. I have heard this from a couple different people during my research. I'm sorry this happened to you, and am also happy your mom took you somewhere else. Thank you again.
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Hi there ,
In February 2016 I noticed a bald spot on the back of my head. I went to the doctor right away and she told me it happened because if my thyroid. I have hypothyroidism. They checked my levels and gave me a different strength of Synthroid. Needless to say the bald spot got bigger and bigger as the months passed by. Then I went to a different place and they told me I had Alopecia . I didn't even know what that was I was shocked but he did tell me that I will have patches of baldness on my head. And that there's no cure for it . So then I made an appointment with my regular doctor and told her what the other place said and she was like I would've never thought you had that it's not common on and on she went but she referred me to a dermatologist. Meanwhile a family member told me that I should go get checked for celiac disease and allergies. Which I did and it came back positive that I am allergic to gluten and dairy and all the dyes, oats , aspartame . Needless to say when I went to the pharmacy to let them know of my allergic situation they told me that my Synthroid has the red dye and Cassin in it . So they had to find me a thyroid hormone pill that was free of this . Said all of this transpired in October by October from February I was completely bald no eyebrow hair no eyelashes nobody here and that's when the dermatologist said I had a yo send all of this transpired in October by October from February I was completely bald no eyebrow hair no eyelashes nobody here and that's when the dermatologist said I had AU. They started the injections in my scalp for three months nothing was happening . So then at this point I have been gluten dairy free following a strictly Paleo diet organic meats and preservative free foods , all of a sudden I just started feeling great feeling full of energy Mystere since disappeared mag semi disappeared I started losing weight my joints don't hurt anymore. Done on my fourth month visit with the dermatologist they decided to do a square Acid
Treatment . Nothing was happening for about another three months and on May they did a stronger strength and I had a terrible reaction. But after the reaction subsided two weeks after I started having a patch of hair on the top of my scalp , then I noticed hair on my right eye and my eyelashes they came in white and now they are black and then I noticed a little bit of facial hair . And then two weeks after they had more hair started growing on top of my scalp so I have kind a like peach fuzz white little hairs all over and there's like two patches that have no hair . Today I go to see my dermatologist and I cannot wait to walk in and see what his reaction will be when he sees all day here they grew in my head. I'm not sure what's helping me if it's the treatments or is it if it's being gluten and dairy free but I'm feeling hopeful I can't wait to see what he has to say today .
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Suzi: I'm so glad you are feeling better. I think in all of this, feeling physically better is great. I'm curious how your dermatologist will react too. Best of luck on your continued improved health, and thank you for sharing.
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