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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JessieRun - thank you for sharing. That is nice to hear you have had good experiences with your doctor
and nurses.
Just had an awesome 1st follow up experience with my derm and wanted to share.
When the doc walked in to the exam room, I was sitting on the table in an exam gown with my wig off. I said, "here I am in all my glory." So, we started with a smile - which most docs are slapped with whining and complaints to start an exam and that sets a bad tone. We talked about some of my specific problems and possible solutions.

The main thing he wanted to talk about was a topical Xeljanz still in trials, but possibly due out within the next year. He had a patient on reg Xeljanz for rheumatoid arthritis; it didn't help her arthritis, but she grew back her hair. She quit it and within 4 months had lost all her hair again. So, he tried to have a Xeljanz topical compounded for her, but it was going to cost about $2000 a month to have done. Good idea, bad timing. I'm not really interested in trying as its doubtful I would get full coverage, and not interested in looking like Betelguese again!

Was suggested Latisse for lashes, but we decided with my corneal problems it best not to go there.

Continue using benezoil peroxide (Clearasil) on the scalp rash/ pimples.

Keep Cerave' anti-itch cream in fridge and use on extreme itchy places.

Moisturize inside nose at night and use allergy meds to control allergies from lack of nose hair to filter pollutants.

And, he asked some sideways questions to check out my state of mind about dealing with AU.

Concluded that I accept things for what they are and didn't need to see him again until my annual check-up next year. Unless something new happened to warrant concern, then call him.
hagster: Thank you for sharing your experience. It sounds like you went in with knowledge and were able to be in a place to listen to options and react with understanding of side effects.

My experience was decent and i was scarred. But my Dermatologist was very humble and nice.

Thank you for sharing Lavonne. I appreciate it. 

My hair fell out relatively fast. From the time it started until it was all gone was about a month. So obviously the clumps of hair were pretty extreme. I went to my doctor saying my hair is falling out in very large clumps. She looks at me and says "I know you may feeeeeel like your hair is falling out but that isn't actually happening" which was funny to me because I never even thought that. I never knew about alopecia or that it was even possible to lose all your hair. It was also funny because I once went to this same doctor saying I had an experience where I felt as though I was going to pass out, she brushed it off telling me I was fine and a few weeks later I passed out. So for a couple of days I just told myself that I was fine. Then I reminded myself that I font trust this doctor and decided to find a specialist.
The first dermatologist I called had a 3 month waiting list, which I thought was insane. I called another which had a year waiting list! I literally wrote down every single number in my insurance network and went down the list until I found someone who could take me almost immediately. She had very little experience with my condition but knew immediately what it was. She was amazing though. Very proactive in helping me and asking other doctors with more experience about their opinions. I only stopped seeing her because she just wanted to try more treatments and I don't see the point in that.
I dont know if alopecia has anything to do w passing out but I had an experience of being extremely lightheaded and almost passinh out right around time when alopecia first started, which I never experienced before.

Thank you JessicaStinkle. How horrible to hear that from your original doctor. So glad you found someone else. Although she wasn't as experienced, it was good she asked questions of more experienced doctors. That is good to hear.

Hi All,

I was suffering from Alopecia Areata from 3 years, now regrowth has started and I am getting my hairs back.

I was frustrated, tried every treatment in the past. Had more than 15 patches on all body, 1 big patch on my beard which covers almost half of the beard, 2 patches on chest, more than 10 patches on head. Now all patches are almost filled. Although I can still some hair fall on the floor. 

I have written a blog with my experience with my images. I hope this will help others as well.

http://shareownxp.in/healthcare/ 

I would be happy to help in case of any questions.

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