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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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...?

My GP referred me to the local hospital where I was asked to attend a kind of group consultation. A series of doctors (registrars/new consultants?) came in to see me one at a time, then the chief consultant. Then they all went away to discuss their findings and the chief consultant delivered the verdict. The initial consultations were OK but the senior consultant was arrogant and unsympathetic.

My diagnosis was frontal fibrosing alopecia. I had lost my eyelashes and eyebrows and my hairline was receding all the time. He just made light of it, saying that it saved me the trouble of plucking my eyebrows and that in their experience my hairline would probably 'only' go back 5 inches. He then added that they didn't know what caused it, it was incurable and quite common in middle aged women. Finally he said that the condition had clearly been around for hundreds of years because you only had to look at portraits of Queen Elizabeth I to see she suffered from it. How that was supposed to give me any comfort I don't know! Also I seem to remember reading that at one time high foreheads were fashionable and that many women plucked their hairlines to achieve them, so not sure his historical diagnosis was accurate.

Anyway, he omitted to mention that the condition could cause loss of hair all round the hairline including the nape of the neck. That diagnosis was around 6 years ago and I have slowly but steadily lost more hair all around my head.

I have not spoken to anyone in the medical profession about it since then, as it seems pointless given that there is no cure.

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?

Certainly I would have liked a more sympathetic response from the main consultant - I think the others were aware he was being insensitive. However, I guess the bottom line is that the condition is progressive, and incurable, since the follicles have been destroyed so no treatment is possible. What else could they say?

I have learned to live with it over the past six years. I have my eyebrows and lash line tattooed and I wear a wig all the time. However, it still does have an effect on my life and that consultant's attitude certainly upset me 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...?

I am 74 years old. Two years ago my hair started falling out, within 4 weeks I had lost all of my hair. I called my dermatologist when I started losing my hair and was able to see him that same week. His first diagnosis was not Alopecia, but telogin effluvia. He thought it was a reaction to medication. I went back to him three weeks later, by then I had lost almost all of the hair on my head. He took a scalp biopsy. The scalp biopsy was normal. Two weeks later he saw me again and I was completely bald with no body hair. At that visit he diagnosed me with Alopecia Universalis. I have several autoimmune diseases: Hashimotos, allergys, and peripheral neuropathy. I am currently going to a Rheumatologist who specializes in Autoimmune Diseases. My hair is beginning to grow back in spots. I have also changed my diet, I avoid many foods that cause inflammation and stay away from preservatives, artificial sweeteners, glutin and processed foods.

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?

The diet change resulted from seeing a doctor who practices integrative medicine. I have been seeing her for around 18 months. I purchase several supplements from her and also follow the diet she has recommended. I am not too disappointed with my dermatologist because he referred me to the Rheumatologist which took a 6 month waiting period. A doctor that I knew at the gym I go to recommended the integrative medicine doctor that I am seeing, which also took a six month waiting period.

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!

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