It's Hair Loss Support At Its Best
I share your pain! It seems to depend on postcode / local healthcare provider..your experience sounds really frustrating and probably only too common.
For me, we have Community Dermatology in my area which is shambolic. Four cancelled appointments, often cancelled on the day they were due to happen, and when I did finally see a Doctor I received my diagnosis in a letter!
I then went on a waiting list of 179 people for a biopsy...so still no actual confirmed diagnosis. Once I have the results back from the lab I am going to ask to be referred to the specialist in my area who seems to be a leading researcher on FFA. In the meantime months have gone by...and with them, loads of hair.
Wishing you well on getting treatment and getting something soon. And if I find out how to make this whole process somehow work (albeit by begging for referrals, or complaining to the health trust) I will let you know xx
Oh my goodness, this is indeed a nightmare! It's like being stuck in a surreal alternative dimension... I started to think that if I could go private I'd get better care. But in my case the specialist I want to see is only NHS, so I'll have to keep pestering to see him! We are one step forward, in that I had a scalp biopsy on Friday, so once the results are back I can begin a small campaign to get referred again.
On this forum there's evidence that some of the drugs being prescribed have a reasonable success rate of arresting the disease, so the letter you received must have been such a blow. It's as if decisions are being made on the basis of cost, and the wrong statistics!
Like you, I have changed my diet. Also doing acupuncture. At least I feel pretty chilled, which helps manage the stress of it all. Good luck! Keep us updated! xx