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Comment by Jules UK on January 22, 2013 at 5:12pm

Hello Rebecca. Welcome to our group. It really has helped me enormously so I hope you will find some support here too. Everyone here knows how desperate you feel but I promise there will be "ups" as we'll as "downs". It helped too to find a reliable wig shop where they assured me that they could disguise this disease when it reached that stage. It gave me confidence that I could still look OK. Please look after yourself.
Liz, I think it would be great to arrange a get-together. I'm happy to travel.....

Comment by Liz on January 22, 2013 at 1:16pm

Hi Rebecca. Welcome to the group. You will find lots of friendly support and information here.I am 41 and was diagnosed last September. It came as quite a shock to me and I worry becuse I dont know how bad it's going to get. I believe that mine started after a very stressful period in my life. I am currently waiting to see a dermatologist in Salford which is a long way from my home but several of the ladies in this group have seen him and he seems supportive even though his doesnt have all the answers that we so wish for, like why,? And how? and how can we stop it from getting worse! I have so far lost about 1.5 inches from my hairline, all of one temple and half an eyebrow! xx

Comment by Liz on January 22, 2013 at 12:50pm

I'm not sure how many of us in the group live in the uk but I was thinking that it would be nice to meet up when the weather gets a bit nicer. Maybe we could arrange something if anyone else is interested?
x

Comment by Debs on January 22, 2013 at 12:15pm

Hi Celia, thanks for the update on your visit to Dr Harries. I have not noticed this dent on my scalp, now you have mentioned it I will keep an eye out for it. I am so sorry to hear about your sister-in-laws health problems, I do hope she gets a clean bill of health when she gets her results. Knowing what is happening at your appointments means I have realist expectations of my own appointment next month, it is a huge help. XX

Comment by Jules UK on January 22, 2013 at 9:22am

I can't detect anything like a ridge yet, but my hairloss is mainly at the sides so far. I'll keep a look out and see what develops over time. This might be the sort of info that should be interesting for Dr Harries - he said he'd not heard of red spots between the eyebrows as has also been mentioned.

Comment by Liz on January 22, 2013 at 6:50am

It reminds a bit of a burn scar because the skin is thinner, indented and has no colour at all x

Comment by Liz on January 22, 2013 at 6:39am

I have exactly the same thing Celia, just in front of the hairline. Its a dip in the central area of my hairline (where it was originally), seevral inches long at least and it was definatly not there before I had this problem.xx

Comment by Jules UK on January 22, 2013 at 6:24am

Hi Celia, re drinking and meds, I was a bit miffed at missing out on wine with my Xmas dinner. So checked with a friend, who's a GP, and she said, although not generally recommended, I could try a drink or 2. So I did, with no ill effects, and now I'm drinking as much as I normally used to. Not a big drinker, just about 1 bottle of wine at most over a week. Always with food. We're all different, of course, so I wouldn't say ignore Dr's advice if you're concerned. X

Comment by Jules UK on January 22, 2013 at 5:27am

Morning everyone. I'm due to see Dr Harries on 1st March for my 2nd appt. He recommended a derm in Sutton Coldfield and I may just switch to her.He said they attend conferences regularly and pool information. I agree with what's been said about medication being so hit and miss. My hairloss got noticeably worse once I started using Protopic, lots each time I wash my hair (every day!). Coincidence, maybe, but the day after I stopped it, having used it for 6weeks, the hairloss lessened sharply. Carrying on with the doxycycline with no side effects.
Like Celia, I know people with life threatening illnesses and it does pull me up sharply. A reality check! Hope your sister in law has positive news. X

Comment by Liz on January 22, 2013 at 4:23am

Good mornign Celia. I wonder who the 'good dermatologist' is in Brighton. I imagine it's the one that I saw who isnt thaat good unless you want to pay him privatly. Strange really becuse now Im waiting for my appointment with Dr Harries!
I was prescribed plaqunil but I'm not risking it. I'd rather be bald that have my eyesight get worse than it is already. I've been told that one effect of the plaqunil is that you lose the colour vision in your eye. As an artist with poor eyesight I cant afford to risk it
It's a shame that there is no definative answer to our hairloss. I guess we can just try to find out as much as possible so that eventually they find a way of helping. It runs in my family so hopefully my children and grandchildren will be able to treat it because of us and our input.
Have a good day Celia and my best wishes that everything goes well for your sister in law.
xx

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