Talk Cancer

Question:

Sorry–didn’t mean to offend you.  I started replying to both sender and group when I found out some of my posts weren’t getting through to the newsgroups I subscribe to.

That’s a reasonable excuse, but complaining to nashville.com would be a good idea. Simply a precaution, so that I know people get their msgs. Usenet isn’t, and never can be, 100% reliable.  It’s a lot better than it was 10 years aog. However, if you do have reason to do it then say so at the *start* of your message (so I read it *before* I start to reply and not after I get to the end).  Something like:     [posted and mailed because my news server is unreliable] And, actually, it wouldn’t have offended me if you hadn’t have replied in the ng as well, but I’m gad you did, for the benefit of everyone else.

Yep, that’s the point.  Your mail arrived first (by hours).  I reply to mail first anyway, frequently.  So then I had to duplicate the effort (I rarely keep copies of outgoing and if I had it’s a pain to convert them to newsgroup format if I no longer have your original post – I expire articles very rapidly to save disc space. Just warn people at the top of your message and they’ll know to keep a lookout for your post to the group – if it doesn’t turn up in a reasonable time they have the option of replying by mail if necessary. –Paul

Response:

Sorry–didn’t mean to offend you.  I started replying to both sender and group when I found out some of my posts weren’t getting through to the newsgroups I subscribe to.  Simply a precaution, so that I know people get their msgs.  And, actually, it wouldn’t have offended me if you hadn’t have replied in the ng as well, but I’m gad you did, for the benefit of everyone else.—And don’t turn into Mr. Hyde on my account; there must be other things in your life that are more important for you to deal with. Thanks for your input! Teresa – Hide quoted text — Show quoted text – Aaaaarrrrrrggggh!  You mailed and posted it without saying anything.  I got the mail first and replied to it.  Now this turned up and I have to reply again.  *Please* don’t do that.  If you can’t (or won’t) turn off a feature of Netscape that I find intensely annoying (or, at the very least warn me at the start of the message that it’s posted and mailed) then all mail from you to me in future will bounce back to you, unread – I don’t want to read and reply to things twice. Now, for the benefit of the group, as opposed to just you alone… I noticed there that somebody said (I don’t know if they were right or wrong) that Darriers is caused by a problem in metabolising vitamin A. That would be correct, but needs clarifying.  A more accurate description is that those of us with Darier’s are physically incapable of transforming beta-carotene into the Vitamin A our bodies need to function properly. OK. Our body chemistries simply won’t do it!  Has something to do with abnormality of Chromosome 12, as well.  I’m quite sure Paul S. would agree that thought is a long-honored, excellent pastime…but we want a CURE, damn it! The interesting thing is that P is similar to Darier’s and some people with P have found that they have dietary triggers.  The triggers seem (to me) to be diverse and with no pattern.  But maybe if they were looked at in terms of depleting beta-carotene and/or Vitamin A they might start to make a little more sense.  Even then it wouldn’t explain why a couple of cups of coffee turns Terry into a mass of scales the day after whilst I’ve gone for a couple of weeks on nearly half a 100g jar of coffee a day without any apparent change.  Maybe it’s could be linked to individual differences in gut microbes. Teresa "getting off my soap box and finding my Southern genteel manners" Stevens I’m not noted for having any manners at all, but people here will tell you I’ve been very restrained when I complained about you mailing and posting me.  Do it again, though, and you’ll see Mr Hyde… –Paul

Response:

Aaaaarrrrrrggggh!  You mailed and posted it without saying anything.  I got the mail first and replied to it.  Now this turned up and I have to reply again.  *Please* don’t do that.  If you can’t (or won’t) turn off a feature of Netscape that I find intensely annoying (or, at the very least warn me at the start of the message that it’s posted and mailed) then all mail from you to me in future will bounce back to you, unread – I don’t want to read and reply to things twice. Now, for the benefit of the group, as opposed to just you alone… I noticed there that somebody said (I don’t know if they were right or wrong) that Darriers is caused by a problem in metabolising vitamin A. That would be correct, but needs clarifying.  A more accurate description is that those of us with Darier’s are physically incapable of transforming beta-carotene into the Vitamin A our bodies need to function properly.

OK. Our body chemistries simply won’t do it!  Has something to do with abnormality of Chromosome 12, as well.  I’m quite sure Paul S. would agree that thought is a long-honored, excellent pastime…but we want a CURE, damn it!

The interesting thing is that P is similar to Darier’s and some people with P have found that they have dietary triggers.  The triggers seem (to me) to be diverse and with no pattern.  But maybe if they were looked at in terms of depleting beta-carotene and/or Vitamin A they might start to make a little more sense.  Even then it wouldn’t explain why a couple of cups of coffee turns Terry into a mass of scales the day after whilst I’ve gone for a couple of weeks on nearly half a 100g jar of coffee a day without any apparent change.  Maybe it’s could be linked to individual differences in gut microbes. Teresa "getting off my soap box and finding my Southern genteel manners" Stevens

I’m not noted for having any manners at all, but people here will tell you I’ve been very restrained when I complained about you mailing and posting me.  Do it again, though, and you’ll see Mr Hyde… –Paul

Response:

Good luck, Paul.  I’m always happy when you drop in here.  Have been having some of that itching myself, although mostly clear from my mtx, but boy, that can be an endless cycle.  Have to just grease myself up and control the urge.   Best regards,

Response:

This Wednesday I plan to go to the Univ. of Wash. Med. School Derm. Grand Rounds to Check in along with my Dermatologist.  I hope that we can take some Digital Pictures and Start a WWW Grand Round on Darier’s Disease.

Hey, Paul.St! Good to hear from you. I remember you were working on a web site and support group. Let us know if you get one going, so I can point people in your direction when they ask. ‘Smatter of fact, someone asked recently up in the parent skin-diseases group, and there’s a fresh response there today, treatment tips and all. Dunno if you ever tried it, but I found some research that capsaicin desensitizes the itch nerves: http://www.pinch.com/skinny?capsaicin+itch Hope all is well there at Itchers and Scratchers Anonymous. Definitely get at least a digital headshot of yourself on the site. I’d like to see how far off my mental image is. Pass along a Hi to Terry.B if you keep tabs. — Ed "(hearing an echo) Love & Hope without expectations" Anderson

Response:

This Wednesday I plan to go to the Univ. of Wash. Med. School Derm. Grand Rounds to Check in along with my Dermatologist.  I hope that we can take some Digital Pictures and Start a WWW Grand Round on Darier’s Disease. Hey, Paul.St! Good to hear from you. I remember you were working on a web site and support group. Let us know if you get one going, so I can point people in your direction when they ask. ‘Smatter of fact, someone asked recently up in the parent skin-diseases group, and there’s a fresh response there today, treatment tips and all.

I noticed there that somebody said (I don’t know if they were right or wrong) that Darriers is caused by a problem in metabolising vitamin A. Food for tbought, as Terry might say. –Paul

Response:

Get some help, please. I believe you are bordering on a DSM3 Group 3.421 disorder and you need help. PLEASE. signed, the good Doctor S

Response:

Paul, That would be correct, but needs clarifying.  A more accurate description is that those of us with Darier’s are physically incapable of transforming beta-carotene into the Vitamin A our bodies need to function properly.  Our body chemistries simply won’t do it!  Has something to do with abnormality of Chromosome 12, as well.  I’m quite sure Paul S. would agree that thought is a long-honored, excellent pastime…but we want a CURE, damn it! Teresa "getting off my soap box and finding my Southern genteel manners" Stevens – Hide quoted text — Show quoted text – This Wednesday I plan to go to the Univ. of Wash. Med. School Derm. Grand Rounds to Check in along with my Dermatologist.  I hope that we can take some Digital Pictures and Start a WWW Grand Round on Darier’s Disease. Hey, Paul.St! Good to hear from you. I remember you were working on a web site and support group. Let us know if you get one going, so I can point people in your direction when they ask. ‘Smatter of fact, someone asked recently up in the parent skin-diseases group, and there’s a fresh response there today, treatment tips and all. I noticed there that somebody said (I don’t know if they were right or wrong) that Darriers is caused by a problem in metabolising vitamin A. Food for tbought, as Terry might say. –Paul

Response:

Thanks Ed for all your work in keeping this a positve accepting and loving site. Sincerely, Paul S. – Hide quoted text — Show quoted text – This Wednesday I plan to go to the Univ. of Wash. Med. School Derm. Grand Rounds to Check in along with my Dermatologist.  I hope that we can take some Digital Pictures and Start a WWW Grand Round on Darier’s Disease. Hey, Paul.St! Good to hear from you. I remember you were working on a web site and support group. Let us know if you get one going, so I can point people in your direction when they ask. ‘Smatter of fact, someone asked recently up in the parent skin-diseases group, and there’s a fresh response there today, treatment tips and all. Dunno if you ever tried it, but I found some research that capsaicin desensitizes the itch nerves: http://www.pinch.com/skinny?capsaicin+itch Hope all is well there at Itchers and Scratchers Anonymous. Definitely get at least a digital headshot of yourself on the site. I’d like to see how far off my mental image is. Pass along a Hi to Terry.B if you keep tabs. — Ed "(hearing an echo) Love & Hope without expectations" Anderson

Response:

This Wednesday I plan to go to the Univ. of Wash. Med. School Derm. Grand Rounds to Check in along with my Dermatologist.  I hope that we can take some Digital Pictures and Start a WWW Grand Round on Darier’s Disease. For me the Primary treatment is to reduce or eliminate sources of trauma to my Skin.  Lately in Seattle I don’t have to worry about the sun or a build up of Sweat.  Friction has still been a problem.  I found some help in talc. I bought 2.5 kg of Talc from a Chemical supply house.  I got a little freaked out about the Cancer warning.  I am going to bring that up at the Grand Rounds. 20 mgs of Doxipin every 4 hours has really helped me to practice the promise of Itchers and Scrathers anonymous to refrain from scratching one itch at a time. I have some moisture and excessive sloughing of skin in my Right ear.  I have been using 100 proof Vodka in it.  This helps.  My Darier’s Disease Dad had this Problem.  He used medical alcohol. I am using 1 to 2 10 mgs. capsules of acitretin ( the new Vitamin a analog for Psoriasis).  When I get up to 2 per day the itching is more and the urge to scratch is unbearable.  Also the probability of infection increases. Eucrerin Plus for the face helps, along with mupricin, 1/cup of clorax in my bath water per 4 inches of depth, and using Cetephil in place of soap. With compassion, Paul S

Response: