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. 

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Grandmajoy - Thank you again for all of this information. Although it's possible the medication has prompted growth, it's possible your dietary changes have contributed. How are you feeling overall after the diet changes. I know from my experience and research that Hashimotos responds well to those dietary changes.So glad to hear you are feeling better and seeing an integrative doctor.

I really think the dietary changes have helped and am not planning on going back to my previous eating habits. I go to the gym 5 days a week and also walk 1 1/2 miles daily, weather permitting.

Awesome!

My grandson was actually born with AA it seems, but when it was pretty evident the bald patches were converging, the pediatrician referred to Johns Hopkins dermatology.  They prescribed clobetasol propionate foam.  He does 3 weeks on and 1 week off.  It seems to work, for the most part but those patches are always there.  They just move around.  Luckily, he has enough hair that they can be covered.  

Iwent to a dermatologist when I just started having bald shedding all over, and they took a"biopsy" and said come back in two weeks. I came back in two weeks and was completly hairless on my whole body, was hoping for injections at first visit. The derm I went before that one prescribed me prednisone. I felt I knew more about alopecia then either MD because how much I was researching while I was going through it. I went to a third derm and he just said Im sorry... which was at least honest!

Rascalx2 - Thank you for sharing. The internet has provided us with the ability to research on our own, which is good and bad, but in the end we are own advocates. If only we could feel our doctors were up on all we knew. The honesty piece is important, even though it's also not what we want to hear. Thank you again.

 OMG, the dermatologist we went to for my daughter was horrible.  Before she had two feet in the door she  said in one breath "Alopecia Areata I've seen 3 of these day". She never spoke directly to my 10 year old. She pulled out some hair, looked at the bald top of her head and said "beautiful" (very weird - to the top of her head?!)  She asked if she was stressed. She prescribed clobetasol. no one ever gave an appropriate dosage amount, and we would have an entire head to cover. The manufacturer couldn't help with that either because it was not indicated for under 12. 

 It turned out my daughter lost her hair from Wen Cleansing conditioner - the next exposure caused the rest of hair to fall out on contact, so it was then pretty darn clear at that time.

 No future visits were helpful. One said to use minoxidil, which caused facial growth in 3 weeks, and another cycle of hair loss because we had to stop using it. Our last visit was equally useless. He didn't want to listen to us, and didn't offer any advice, and couldn't say if her issues would likely be temporary or permanent (but this didn't surprise me)

I lost all my hair last May within a 3 week period. I was told it would take at least 6 months to see my dermatologist because a needed to be referred by my GP as it had been over a year since my last appointment. I kept calling for a faster appointment and I was able to see him within a month. I waited 2 hours to see him and he basically told me that I had Alopecia. Duh! It was a total waste of time. The Internet was more informative.

CCV - Although it's nice that we have the internet to research everything, I do believe doctors have an obligation to fully inform us, treat us like human beings, apologize for being late...I'm sorry you had such a poor experience. I appreciate you sharing this with me.

Kyleigh - So sorry to hear all of this, especially the fact that she didn't even look or interact with your daughter. Were there any resources that were offered, other than treatment options, with any of these doctors? Thank you for sharing your information. I look forward to hearing back.

I had a small patch on the back of my head. My GP told me not to worry, I probably just backed into a bare bulb in a closet to the basement. That was 45 years ago and I am 44 year universalis.

Tandelor - Thank you for sharing. Your brief description had me smiling, even though it is a serious subject. Did you ever go back to your GP for that reason, or were you on your own?

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