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.
I've had brief periods of alopecia areata for many years but all involved only very small areas of my scalp. Two years ago my head hair began falling out everywhere and I was very alarmed. I went to my family doctor (wearing a hat) and the doctor laughed at me, told me I didn't need a hat, I needed to stop stressing so much, and that it was already starting to grow back. He told me to read the mayo clinic website. Needless to say I've never been back to see that doctor, especially since my condition progressed to alopecia universalis! Fortunately, I'm an MD, understand this condition medically, and have a very strong comfort level about myself, or I would have been CRUSHED! This doctor's approach could have been devastating to many!
Nanboman - Thank you for your feedback. I'm shocked to hear this. It was almost like your doctor was treating you like an acquaintance and someone he could just convince that this wasn't serious enough to warrant treatment. I'm wondering what he thought the Mayo Clinic website could give you? Do you have a certain specialty that you work in as an MD? I've met several physicians who also have alopecia, and I enjoy hearing about their specialties if they have one. If you wouldn't mind sharing, what would you have wanted to hear from your doctor during your appointment? Has this made you a better doctor from your bad experience with yours? Thank you again. I look forward to hearing back from you.
In my experience Doctors know nothing about Alopecia and refer straight on to determatologist who in my case knew nothing either, had no experience with alopecia and knew nothing about wigs etc. Didn't take long to get an appt but the appointments were expensive and a waste of time. Scientific study is needed, there is an answer.
Debbie - Thank you for responding. I'm sorry you didn't get any insight straight-away from either doctor you went to see. I do believe there is an answer as well. Would you mind telling me what you had wished either of your doctors would have told you, encouraged you to do, informed you of...?
Maggiemay - Thank you so much for sharing your experience. I'm so sorry it was such a poor one. That must have been horrid. Instead of him making light of it, would you have preferred he just tell it to you like it is? The facts only, the extent of how it could progress, treatment options, and avoidance of historical untruths? I think oftentimes we don't know what we are seeking when something like this is happening, but we often want some semblance of reassurance, resources, and possibilities of what the future might look like. Was that also true for you at the time?
Maggiemay - Thank you for following up. Do you wish that in light of such a diagnosis at the time, would it have been helpful to have information for other resources like support groups, Alopecia UK, facebook groups...?
Grandmajoy - Thank you for sharing. It sounds like working with a Rheumatologist has been helpful for you, especially considering your other autoimmune diseases. Did the suggestions for diet change come from your Rheumatologist, or did you try that out on your own? What would you have liked to hear with that first doctor at the first appointment to the last?
Deeann, I forgot one important item: About 8 months ago I told the Rheumatologist, that I had pain in one joint and then 1 to 2 days later the pain would move to another joint. He called this condition migrating joint pain and put me on a low dose of Hydroxychloroquine. The migrating joint pain has stopped. The Rheumatologist feels that the medication is the reason for my hair growth. He said if I stop this medication all of the hair may once again fall out. Whatever happens I know one thing BALD IS BEAUTIFUL!