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Erythroderma ForumsExfoliative Dermatitis Researchvideo on U-tube about Erythroderma
03/08/2011 12:58 PM
violett
violett
 
Posts: 3044
Group Leader
I'm an Advocate

Erythrodermic stage of CTCL

http://www.youtube.com/watch?v=alj6Yds4G00

This pretty well describes me. Are the rest of you like this?

I found several videos on u-tube about Erythrodermous conditions, but most were not in English.

Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference." anonymous

"A friend knows the song in my heart and sings it to me when my memory fails. "
~ Donna Roberts

Join me at:
http://www.mdjunction.com/arrhythmias
http://www.mdjunction.com/erythroderma
http://www.mdjunction.com/photoallergy
http://www.mdjunction.com/irritable-bowel-syndrome
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03/08/2011 04:42 PM  Top
mayadeb
mayadeb
 
Posts: 192
Member

I have the redness, but not thickened skin. I've watched some of the videos and there are some interesting ones. I like that they are short.

Previous discussions I participated in:
very ill again
New here
Cold Weather

03/08/2011 05:53 PM  Top
violett
violett
 
Posts: 3044
Group Leader
I'm an Advocate

I have the thickened soles & palms too. Fortunately it cycles and is not that way all the time.

I like the short videos too. Wish there were more. Roy said to use the search on the video page and when we find a good selection of videos for this disease, to give him the search words and he'll fix it where those come up. However, when I searched, there was little, and most was not English.

I'm going to see my specialist at Vanderbilt on the 25th for a biopsy and discussion on changing my meds. I hope it isn't CTCL, but if it happens to be, they have a clinic for it there, and I'd be in good hands.

I also looked up my doctor there. He is extremely qualified. He is a professor at the University, a leader in research, a specialist in dermatology, and has written many articles for Medical Journals.

Take care.

violett

Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference." anonymous

"A friend knows the song in my heart and sings it to me when my memory fails. "
~ Donna Roberts

Join me at:
http://www.mdjunction.com/arrhythmias
http://www.mdjunction.com/erythroderma
http://www.mdjunction.com/photoallergy
http://www.mdjunction.com/irritable-bowel-syndrome

Previous discussions I participated in:
Inner Peace
March 7 Freebees
Darn that man!

03/09/2011 01:40 PM  Top
mayadeb
mayadeb
 
Posts: 192
Member

You're lucky to have such a well-qualified doctor--someone who is current in the research. What will the biopsy tell you? A dermatologist in Colombia wanted to do a biopsy on me, but I begged off.

Previous discussions I participated in:
very ill again
New here
Cold Weather

03/09/2011 03:13 PM  Top
violett
violett
 
Posts: 3044
Group Leader
I'm an Advocate

The biopsy is to see if I have Cutaneous T-Cell Lymphoma (CTCL). I pray it is not that. But if it is, at least it is slow growing.

My doctor's research is in skin, but not in Erythroderma. I dont think anyone researches it.

Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

"Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference." anonymous

"A friend knows the song in my heart and sings it to me when my memory fails. "
~ Donna Roberts

Join me at:
http://www.mdjunction.com/arrhythmias
http://www.mdjunction.com/erythroderma
http://www.mdjunction.com/photoallergy
http://www.mdjunction.com/irritable-bowel-syndrome

Previous discussions I participated in:
Inner Peace
March 7 Freebees
Darn that man!
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