Overgrowth of skin resulting in hair loss

[Beegirl]

I am a 45 year old woman. Two years ago, I had a pimple on the back of my neck.  I kept picking at it, so it didn't heal properly.  Instead, the skin around it seemed to begin to cover over it.  Then  I noticed that skin seemed to be growing on my neck and down my                 shoulders..sometimes thick sometimes hard, seemed to be fused to my "normal" skin. Then I noticed that it seemed to also have creeped up my head.  I have thick skin overlapping the back of my scalp and my hair will not grow on the back of my head.  I also have small hard bumps and it seems to have pushed my hair up and forward and underneath...what appears to be my scalp is skin that has grown over hair, and hard as rock plaque areas. No treatment has helped.
Antibiotics, shampoos, steriod shots.  My doctor insists it is folliculitis and is now giving me Rogaine, but  I feel that is treating the symptom (hair loss) and not the underlying problem (hair trapped under skin, plaque, etc.)
Any help or information you can give me would be appreciated.  I feel I have something that nobody has ever heard of.  I've had my neck x-rayed, ultrasound, had a CAT scan, biopsied by an oncologist because they thought they found an enlarged lymph node on the CAT scan but found nothing but inflamed tissue on my neck.   I keep telling everyone what the problem is, but they can't "see" anything.  But I can feel it and I know it is not normal.  Help, please!

[antemon]

A related discussion, Continuation of 2003/4 skin over scalp hair issue was started.

[Carletta]

I've had the exact same problem for two years now.  I'm on to my 5th dermatologist at this point.  (Comments range from "fascinating..." to "I'm not familiar with this...".
Has yours resolved?
I'm convinced it has to do with hyperactive oil glands.  My doc has recommended Accutane which I'm a bit scared to try.  I've had 15 pulse laser treatments which has helped somewhat on my face.  
Best temporary treatments thus far (removes outer layer so you can see your skin again...) is Dermalogica's exfoliative scrub and Qtica hand peel (yep, heavy duty, I know.  I use both on my neck and face, upper back and thighs.  The problem seems gravity related, too?)
I'd be grateful for updates on your progress and any theories that you may have.  
Carletta

[Carletta]

I've had the exact same problem for two years now.  I'm on to my 5th dermatologist at this point.  (Comments range from "fascinating..." to "I'm not familiar with this...".
Has yours resolved?
I'm convinced it has to do with hyperactive oil glands.  My doc has recommended Accutane which I'm a bit scared to try.  I've had 15 pulse laser treatments which has helped somewhat on my face.  
Best temporary treatments thus far (removes outer layer so you can see your skin again...) is Dermalogica's exfoliative scrub and Qtica hand peel (yep, heavy duty, I know.  I use both on my neck and face, upper back and thighs.  The problem seems gravity related, too?)
I'd be grateful for updates on your progress and any theories that you may have.  
Carletta

[Beegirl]

I've done alot of research and I know what you are talking about.  It may not matter, but I'm not African-American.  Also, that would not explain why I have hard skin on top of my neck skin that when I am able to work it apart (it's fused) I release the skin (and hair) that lies underneath it.
The "bumps" are on the back of my head, not on my neck.  
I have layers of skin that I can feel trapped on my head.
I have a rock hard layer of something covering my scalp and my hair will not grow.
That is why I didn't think the Rogaine would help.
I am aware of how odd this sounds and that is why I think I have something unusual.
I

[Alan Rockoff, MD]

There is a condition called folliculitis keloidalis nuchae.  This produces scarlike bumps on the nape.  It occurs almost exclusively in Africans or African-Americans.  Cause is unknown.  Treatment is only somewhat helpful, and includes steroid shots, which you have already had.  Rogaine is unlikely to grow hair in scarred areas, but seems harmless enough.

I don't know, of course, whether this is exactly what you have, but it sounds as though you have shown the condition to enough physicians.  The fact that this is not "nromal " is no doubt true enough, but that doesn't mean that the condition has any larger significance or that there is anything else to be done about it.  For better or worse, some things have to be lived with.

Best.

Dr. Rockoff