I have been diagnosed with alopecia

[MrsBugi]

Originally posted by: narzy

Originally posted by: MrsBugi

Originally posted by: narzy
I can really understand how that news is shocking to you. My mother lost all of her hair when she was doing chemo for her breast cancer. It was difficult for her too at first but she actually embraced it. After a while she appreciated how easy it was to keep her 'hair' and how much easier it was to wash her head.

I have a great picture of her with the blueman group in vegas with a big blue kiss on her bald head. (no you can't see it)...So while it is shocking, and all sorts of bad right now, you may learn to see a brighter side.

:wine:

Also, she found tubins much more enjoyable than wigs. I don't know but you might be able to pull off that look as well.

Oh yeah, and take a deep breath, you seem to need one...

Your mother sounds like such a strong woman, wow. That picture sounds so sweet and there is definitely a lighter side to such a seemingly dire situation. How is she doing now? It sounds like she has developed a very positive attitude towards it and I really hope I'll be able to do the same sooner rather than later. Thanks forthe tubin suggestion, I'll do some more research on that option for myself. Thank you for the deep breath reminder, lately I've been forgetting.

She is doing really well, cancer free so far and I hope to let it stay that way for a very long time. But she is a VERY strong woman...she had to raise me...

That is awesome to hear, go narzy's mom go! :thumbsup: My mother had her uterus removed after they found some cancerous cells, so scary and really makes you appreciate your loved ones and life more. You made elite so obviously have qualities to show that your mom did many things right!

 

[zinfamous]

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

sorry to hear about it. but the diagnosis could be much, much worse.

 

[boomerang]

I had areata decades ago in my beard area. It did not affect the whole area. I received treatment from a Dermatologist that had a keen interest in the affliction.

AFAIK, nothing has really changed since my bout of it. By that I mean that I may well have recovered the hair growth without treatment. I'll never know at this point. My insurance covered the treatments.

As you may have gathered, I did eventually regrow those patches in my beard area. However, the color did not return. The regrowth was pure white.

There seems to be some confusion here regarding the different varieties of this affliction.

Areata - area
Totalis - head
Universalis - entire body

 

[shopbruin]

I need to get my eyes checked, i thought totalis was "toenails" and I was trying to figure out if your toenails were going to fall off due to hair loss. Bad me.

No experience, but the best of luck. I shed a massive amount of hair and it makes me sad, so to lose hair that doesn't grow back would drive me nuts too.

 

[Drako]

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

My wife had/has alopecia areata. She had two spots on the back of her head, both about quarter size. She was really paranoid about it for a while, but she was able to keep the spots covered with the rest of here long hair.

The doctor seemed to think it had something to do with her menopause, but it was never really confirmed. The spots slowly went away after she started hormone treatments.

 

[MrsBugi]

Originally posted by: zinfamous

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

sorry to hear about it. but the diagnosis could be much, much worse.

That is very true and I'm glad it's not. Still tough though

 

[MrsBugi]

Originally posted by: boomerang
I had areata decades ago in my beard area. It did not affect the whole area. I received treatment from a Dermatologist that had a keen interest in the affliction.

AFAIK, nothing has really changed since my bout of it. By that I mean that I may well have recovered the hair growth without treatment. I'll never know at this point. My insurance covered the treatments.

As you may have gathered, I did eventually regrow those patches in my beard area. However, the color did not return. The regrowth was pure white.

May I ask what treatment the dermatologist prescribed? A specialist I saw suggested steroid shots regularly in my scalp but I can't stomach the idea and there's no guarantee it would work. Thank you for sharing your experience, is your beard's regrowth as thick as it was originally?

 

[MrsBugi]

Originally posted by: freesia39
I need to get my eyes checked, i thought totalis was "toenails" and I was trying to figure out if your toenails were going to fall off due to hair loss. Bad me.

No experience, but the best of luck. I shed a massive amount of hair and it makes me sad, so to lose hair that doesn't grow back would drive me nuts too.

Heh. I've shed tons of hair since I was small but I'd never seen bald patches or my scalp until about two years ago...

 

[Crusty]

You can get cortisone injections that apparently help, but from what I've read it either works a little bit or doesn't at all.

 

[MrsBugi]

Originally posted by: Drako

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

My wife had/has alopecia areata. She had two spots on the back of her head, both about quarter size. She was really paranoid about it for a while, but she was able to keep the spots covered with the rest of here long hair.

The doctor seemed to think it had something to do with her menopause, but it was never really confirmed. The spots slowly went away after she started hormone treatments.

I empathize with your wife, I used to cover my patches with existing hair as well but the thinning has gotten so diffuse that there isn't enough hair to cover the patches and I haven't found the combover method effective anymore. May I ask whether the hormone treatments were related to the alopecia areata, menopause, or something else, what specifically they were (testosterone/estrogen/etc?) and how long did it take for the spots to go away?

 

[MrsBugi]

Originally posted by: Crusty
You can get cortisone injections that apparently help, but from what I've read it either works a little bit or doesn't at all.

Thanks Crusty, that was suggested to me but I can't imagine getting regular injections into my scalp (8-10 at a time apparently) with only an "it might work" guarantee.

 

[zoiks]

Originally posted by: MrsBugi

Originally posted by: freesia39
I need to get my eyes checked, i thought totalis was "toenails" and I was trying to figure out if your toenails were going to fall off due to hair loss. Bad me.

No experience, but the best of luck. I shed a massive amount of hair and it makes me sad, so to lose hair that doesn't grow back would drive me nuts too.

Heh. I've shed tons of hair since I was small but I'd never seen bald patches or my scalp until about two years ago...

I've seen your previous pics. You're kind of naturally hot looking so you'll be okay.
One step at a time.

 

[Riceninja]

POASTING IN LEGANDARY THRAED

 

[boomerang]

Originally posted by: MrsBugi

Originally posted by: boomerang
I had areata decades ago in my beard area. It did not affect the whole area. I received treatment from a Dermatologist that had a keen interest in the affliction.

AFAIK, nothing has really changed since my bout of it. By that I mean that I may well have recovered the hair growth without treatment. I'll never know at this point. My insurance covered the treatments.

As you may have gathered, I did eventually regrow those patches in my beard area. However, the color did not return. The regrowth was pure white.

May I ask what treatment the dermatologist prescribed? A specialist I saw suggested steroid shots regularly in my scalp but I can't stomach the idea and there's no guarantee it would work. Thank you for sharing your experience, is your beard's regrowth as thick as it was originally?

Well, remember this was 30 years ago. He had a device he called a dermajet. Essentially, it blew what may have been a steroid (sorry, too long ago to really remember) into my skin. It was a white liquid. He would wipe up or smear around whatever extra there was with his bare hand IIRC. He used it on me strictly where there was hair loss. While it didn't actually hurt, it was rather uncomfortable. There was a considerable amount of pressure involved.

Yes, it grew back just as thick as it had been prior. By that I mean the density was the same and the hair itself was just as thick - just no color.

 

[Mo0o]

Just doing some reading on UpToDate, it seems like most people have spontaneous regrowth. But current treatment guidelines suggest intralesional or topical corticosteroids to quell the autoimmune response. Any particular reason you're really against this idea?

 

[Drako]

Originally posted by: MrsBugi

Originally posted by: Drako

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

My wife had/has alopecia areata. She had two spots on the back of her head, both about quarter size. She was really paranoid about it for a while, but she was able to keep the spots covered with the rest of here long hair.

The doctor seemed to think it had something to do with her menopause, but it was never really confirmed. The spots slowly went away after she started hormone treatments.

I empathize with your wife, I used to cover my patches with existing hair as well but the thinning has gotten so diffuse that there isn't enough hair to cover the patches and I haven't found the combover method effective anymore. May I ask whether the hormone treatments were related to the alopecia areata, menopause, or something else, what specifically they were (testosterone/estrogen/etc?) and how long did it take for the spots to go away?

She was getting estrogen treatments becuase of the alopecia areata and the menopause, and that seemed to start new hair growth in the balding areas. The doctor seemed to think that the menopause had triggered the alopecia areata. The bald spots went from totally bald, to peach fuzzy, and then back to normal hair. I think it took about a year for the hair to become normal again, of course it took a while longer to grow back to the length of her other hair.

 

[MrsBugi]

Originally posted by: boomerang

Originally posted by: MrsBugi

Originally posted by: boomerang
I had areata decades ago in my beard area. It did not affect the whole area. I received treatment from a Dermatologist that had a keen interest in the affliction.

AFAIK, nothing has really changed since my bout of it. By that I mean that I may well have recovered the hair growth without treatment. I'll never know at this point. My insurance covered the treatments.

As you may have gathered, I did eventually regrow those patches in my beard area. However, the color did not return. The regrowth was pure white.

May I ask what treatment the dermatologist prescribed? A specialist I saw suggested steroid shots regularly in my scalp but I can't stomach the idea and there's no guarantee it would work. Thank you for sharing your experience, is your beard's regrowth as thick as it was originally?

Well, remember this was 30 years ago. He had a device he called a dermajet. Essentially, it blew what may have been a steroid (sorry, too long ago to really remember) into my skin. It was a white liquid. He would wipe up or smear around whatever extra their was with his bare hand IIRC. He used it on me strictly where there was hair loss. While it didn't actually hurt, it was rather uncomfortable. There was a considerable amount of pressure involved.

Yes, it grew back just as thick as it had been prior. By that I mean the density was the same and the hair itself was just as thick - just no color.

Interesting, thank you for trying your best to recall the process. I wonder if it was what restimulated your hair growth or if it came back on its own... there's been relatively little research done on this topic, I wish there were more detailed long-term studies on different techniques.

 

[MrsBugi]

Originally posted by: Mo0o
Just doing some reading on UpToDate, it seems like most people have spontaneous regrowth. But current treatment guidelines suggest intralesional or topical corticosteroids to quell the autoimmune response. Any particular reason you're really against this idea?

I'm hoping for the spontaneous regrowth but after 2 years it's getting progressively worse and not better. I tried topical corticosteroids for a couple days, it severely irritated my scalp and the doctor discontinued treatment of that and I was concerned about how the steroid absorption would affect me overall. As for the injections, it appears to be an extremely lengthy and painful process, 8-10 injections each time over my scalp gives me chills and with no guarantee for positive results (and associated risk of negative results) I don't think I'm ready to take the chance.

 

[RKS]

Shit I have it too. I have a big round patch missing in the back of my head and now my facial hair/growth is in clumps.

 

[boomerang]

Originally posted by: MrsBugi
Interesting, thank you for trying your best to recall the process. I wonder if it was what restimulated your hair growth or if it came back on its own... there's been relatively little research done on this topic, I wish there were more detailed long-term studies on different techniques.

Well, that's what I was alluding to in my earlier post. IIRC, the Dermatologist himself said that there was no true treatment for it and that the community was not truly certain if the "treatment" they had devised actually accomplished anything. He wanted to do what he did and insurance covered it, so I went in for appointments and he did his thing.

Like I said, he said that alopecia was a big interest for him, so I sort of indulged him as long as insurance covered the appts. I figured it was probably better to accept what treatment was available rather than choose to ignore the condition. Right or wrong, I do not know.

 

[little elvis]

I suffer from localized alopecia areata which is limited to my beard area and the sides of my scalp (right now I have a quarter sized patch on my scalp near my left ear), only a single effected area at a time, up til now I've never had multiple patches. Early on, regrowth would usually happen with in 2 to 3 months, but now, regrowth typically takes 6 to 8 months.

When I was first diagnosed, my doctor recommended some corticosteroids cream, however, it was his belief/opinion that these creams really do not effect the speed at which regrowth would occur and whether or not regrowth would occur at all. Which in my case appears to be the true.

That being said, it was about 15 years ago that I was first diagnosed, it would be interesting to see if any improved treatments have been developed.

 

[nod218]

A little of the subject, but I was wondering if you're chinese. The ginger-soak brandy cure your mother was talking is exactly what my mom uses to cure anything. Sore back, sprain ankle, anything that didn't involve broken bones or cuts the alcohol soak ginger was brought out. BTW, I am sorry to hear about this, just cherish the fact that you have supportive friends and family.

 

[AreaCode707]

Originally posted by: MrsBugi

Originally posted by: ja1484
Had a friend with it back during my childhood.

For my part, I wouldn't have a particular problem with someone not having a typical head of hair. I understand I might be different from the norm though.

PM to talk? Perhaps try out the ole shaved head look or become a hat aficionado?

If and when the time comes and Toppik (which I have been using to cover scalp patches so far) no longer works, I will shave my head and start wig shopping. Thank you for the support, did your friend's condition improve and if so what did he/she do? I'm still in the denial phase somewhat, I'm hoping there will be some magical cure (my mom insists I rub the bald patches with ginger soaked in brandy) but deep down I know there isn't.

It's really good to hear that you wouldn't have a particular problem with someone not having a "typical" head of hair. I think the social stigma is much more against women with baldness though, with men it's much more understood and accepted. It's defintely a process but luckily the few friends and family members and of course my husband I've disclosed the news to have been supportive.

You'd actually look quite hot with the shaved head look, no wig.

 

[amdhunter]

Originally posted by: MrsBugi
Lots of tears. Lots of confusion. Lots of frustration, shame and embarrassment.

A doctor diagnosed me with diffuse alopecia areata, possibly in the early stages of alopecia totalis. I am in the process of gathering more information about it. It's been a shock and has been challenging to deal with and accept.

Does anyone else have any experience with alopecia or know anyone who has?

I don't care what you have.

I speak wholeheartedly for ATOT when I ask...

Pics??

 

[Darthvoy]

Look on the positive side... you don't have aids or cancer. All joking aside, I wish you the best of luck.