Update from me

Hi everyone. Well, it's been a little while, thank you all for your supportive comments, and thank you Sally for your lovely blog post.

So - here's what is happening - I have been absent b/c we just moved, and I am living in two towns (my work is still in the old town). My hair - I had told you that it was coming back with Minoxidil and a cortisone cream. It turns out this is just partially true. My hair on the right side of my head is still thinning, with patches appearing behind On top of my head - I'd say it's slowing down - hard to tell. On the right side - regrowth (!!) Go figure. I don't get it. I can't get back to the dermatologist until November.

I think it was wishful thinking... but not only... I was much less stressed all summer, and was better with mmy diet and supplements.

I guess it's scary to contemplate the future with this progressing and permanent, as Sally said so well.

I think I'm officially menopausal now - my blood tests show practically no estrogen and I have spotting but no more periods. I'm getting more hot flashes than a year ago - often when I'm stressed I notice. I'm considering trying hormones again - but I have a hx of depression so this concerns me. Not worth depression - nnothing is.

My hair is now worn curly (curly curly) and has its good and bad days. It hides the loss for now. And like I said it's lopsided loss - much more obvious on the right side. Don't know if others have this.

I welcome the new people here to this unfortunate forum that fortunately exists for us. Take care,

Views: 664

Replies to This Discussion

Permalink Reply by Halfbakedwho on September 26, 2017 at 2:17pm
Today I really noticed the patches growing on the top of my hairline. I think I will go consult one of the hair esthetic centers here to get a hair powder. I don't think it's wig or hairpiece time yet, but it's reassuring to know they're there. I want to be able to project myself into the next years of my life without fear - without the dread I wake up with... that question - how much hair have I lost since yesterday/last week/last month...? I'm sure you know what I mean.
I don't know what color powder to order, or if I need two and need to blend them. I kind of prefer to have some nice lady show me.
A good friend asked me how my life would be different if my hair wasn't thinning. It wouldn't be much different, except for the dread. Basically this illness affects me with dread - for my future appearance but also how I might feel physically (if my unofficial Sjogren's gets worse, etc.).
The most important thing in the face of this is to grab onto life and live, no matter what. We are all going to get older and we're all not here for much longer. I'm 51 and a half and not done yet.
So thank G-d for powder and wigs.
Permalink Reply by Minter on September 27, 2017 at 8:40am

That is an interesting question that your friend asked- makes me think about how my life would be different if I had a full head of hair, I know I would be more confident for one thing, not always fussing with my hair, pulling it down over my ears and always avoiding bright, downward lighting or the bright sun :-/and not having to think about what am I going to do in the near future when it gets really noticeable.   My bucket list number one wish is travel the USA in an RV for at least a year before my time is up and it makes me sad that I may very well be doing it fussing with a wig or hairpieces or powder or an intralace system. 

Anyway, as far as hair powder, here is the link to what I use as per my earlier post :-)

https://www.tambeauty.com/en/Makeup-Revolution-Hair-Revolution-Root...  

this stuff is great (I use this on the sides of my hairline & either boostnblend on its own or a blend of boostnblend and Revolution hair powder on the part on the top of my head) and stays on all day and I can keep it light or build it up the color more depending on how my hair is behaving or if I have recently had it colored and it is cheap, I am not going to break the bank buying it- I've also used eyebrow powder in a pinch!  So something like this may be something to consider to try out before you get more expensive stuff?  It will be interesting to hear what a pro says too!

Permalink Reply by Halfbakedwho on October 6, 2017 at 4:38pm
Latest is I have a doctor, whom I decided to NOT declare as my main doctor (which you must do in France) because he is so disagreeable but he is also terribly right in what he says. He just says everything shouting at you. "Your blood results show you have an autoimmune problem!! Why don't you do something about this???!!" Well, gee no one has gone over the results with me, and I just moved to another region, so there you go. Also "you have NO HORMONES left in your body! This isn't normal! You MUST take hormones!!" Well, okay then. He is a total freak, he is insane, but he's perfectly right. Prescribed me a lot of supplements - omega 3 and vitamin D and of course estrogen/progesterone. Now here is the question - do any of you show positive antinuclear bodies in your blood test results? I have a suspicion of Sjogren's syndrome, but I'm not tired and don't have joint pain. I have dry mouth, dry eyes, and dry everything else. I can't be far from a source of water (and a bathroom) for too long. And of course the FFA.
So again do you have the antinuclear issue? That actually sounds kind of amusing, in a very dark way. Given these times.
Permalink Reply by illustr8r on October 6, 2017 at 8:05pm
HBW- when I had my big flare and my hair was rapidly falling out my dr. ordered a ANA test which looks for AutoImmune antibodies and categorized then by disease-Lupus, rheumatoid arthritis etc... I had 3.2 score for Scleroderma. I went to a rheumatologist and she did more detailed blood work and a physical exam. Those labs came back negative for anything. I read somewhere that Alopecia (FFA) can trigger a false positive in ANA tests (in elderly women).

I’m not elderly! Dammit. I’m 53.
Permalink Reply by Halfbakedwho on October 7, 2017 at 2:22am
False positive is a good thing!!!! Not elderly here either (51). I am going to see an internal medicine specialist. The only other thing I have is aforementioned dry mouth/dry eyes. In November I'm going back to the hair specialist and probably will have a biopsy.
Something I don't get, and maybe you all could explain - the idea of lichen planopilaris confuses me. Lichen is like a fungus. Would we have a fungus? Is this one and the same thing or is there a differential diagnosis? This is unclear in the internet reading. At least to me.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service