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just diagnosed

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just diagnosed
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#91
Sun-20-11-2016, 10:55 AM
Caroline, I was referring to people without medical training who make up stories about disease histories and how they were cured, not people who learn from experience. They are very different. Fred's best defence against miscreants is the long story, which the layout of his site encourages. It is easy to steal a couple of pics from the web, make up a bogus story, and then present your wonderful tale of a miracle cure attained without medical assistance. The difficulty lies in maintaining the deception, especially if that entails a series of photographs. I dont mean to cause any offence, Caroline, but I do have a strong dislike of dishonesty.

Cheers,

Bill
Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,520
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#92
Sun-20-11-2016, 18:24 PM
(Sun-20-11-2016, 10:55 AM)Bill Wrote: Caroline, I was referring to people without medical training who make up stories about disease histories and how they were cured, not people who learn from experience. They are very different. Fred's best defence against miscreants is the long story, which the layout of his site encourages. It is easy to steal a couple of pics from the web, make up a bogus story, and then present your wonderful tale of a miracle cure attained without medical assistance. The difficulty lies in maintaining the deception, especially if that entails a series of photographs. I dont mean to cause any offence, Caroline, but I do have a strong dislike of dishonesty.

Cheers,

Bill

I fully agree with you point on dishonesty Bill shake I hate imposters who are trying to steal the money of people who are in distress.

But I wanted to point out, make a distinction, that there are two "types" of natural doctors, the impostors and the ones that are plainly very good and have a better view on diseases that even regular medicine has.
Kat Offline
Take my advice; I don't use it anyway.
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Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#93
Mon-21-11-2016, 16:28 PM
(Tue-08-11-2016, 20:29 PM)svp3058 Wrote: I am a woman 58, just was diagnose of psoriasis... not 100%   , but very close, going to see dermatologist next week..
I am covered by terrible red spots (a lot!) - hands look ugly, legs too, but other parts of the body start to show these red spots... Feel very frustrated..How can i go to south vacation - i look scary for people.
Wall

Welcome!!

Well, first never feel you look ugly although I understand the social aspect of dealing with psoriasis and have had numerous embarrassing moments myself. The important thing is to find treatment so that you feel better first and try not to worry about those people that don't matter anyway (yes, I know it's hard)

You're not alone and this is a great place to be because everyone here understands the struggles.
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#94
Tue-22-11-2016, 01:40 AM
(Mon-21-11-2016, 16:28 PM)Kat Wrote:
(Tue-08-11-2016, 20:29 PM)svp3058 Wrote: I am a woman 58, just was diagnose of psoriasis... not 100%   , but very close, going to see dermatologist next week..
I am covered by terrible red spots (a lot!) - hands look ugly, legs too, but other parts of the body start to show these red spots... Feel very frustrated..How can i go to south vacation - i look scary for people.
Wall

Welcome!!

Well, first never feel you look ugly although I understand the social aspect of dealing with psoriasis and have had numerous embarrassing moments myself.  The important thing is to find treatment so that you feel better first and try not to worry about those people that don't matter anyway (yes, I know it's hard)

You're not alone and this is a great place to be because everyone here understands the struggles.
Thanks a lot, Kat.
I met here wonderful and very kind people, got lots of information, great advices that helped me to get a little peace  in my mind...
I gave up vacations due my really ugly looking hands and legs (mostly) and body too...
I was prescribed phototherapy only so far, but it is not possible to get it since the clinic is very far away from home and also from my work, and locates in very busy traffic area and their schedule is not working for me :(  (I am just wondering why ANY medical facility can not have this simple phototherapy lamp and what other people with similar condition do in my area..., very curious Confused  - the question to be addressed to our government here in Canada).
We end up by ordering  pretty expensive Psoriasis lamp to be used at home (vacation fund paid it off  :((  ) - it did not arrive yet (we understand the risk of home light therapy, but for now there is no other way to make me better).
As a good  news I can see some rashes are gone without any treatment, but so many still hear, and no sign of them to disappear.. Trying not to cry and less complain to my hubby about "how unlucky i am"...etc, keeping smile and doing my best to move on, not always 100% successfully but Ii am trying really hard...
i have full support from my family, and also from this community, so I keep going...
I will update here if any improvements happen.
Thanks again! Wave
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#95
Tue-22-11-2016, 02:03 AM
I hope it works well for you, but don't wait for it to begin working to come back to tell us, come any time just for the company of fellow sufferers ....that's what a lot of us do
It can be a struggle coming to terms with, but you will find you will probably have periods of none or very little psoriasis showing, look forward to those times, but creams lotions and light treatment are merely holding it at bay ....but you could get clear for months or even years. I hope that is the case for you, but whatever happens come to talk it's a big help, it certainly did wonders for my self confidence when I joined here and found I wasn't alone with this awful disease ....I just keep coming back, the members are so friendly, and helpful with advice


I can't remember if I mentioned it before but a great way to see what's happening in the psoriasis world and read of other members experiences is to get a newsletter in your inbox once a month Groups



Sorry I'm shamelessly promoting it as I have just taken over as editor shhh
Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#96
Tue-22-11-2016, 02:17 AM
Yes, be careful with the home treatment of light therapy. Hopefully you have a doctor that can help you set up a treatment schedule based on what you purchased? It is really a shame that there is not one close enough for you to go to. I do understand why you are going that route, just be careful.

Sometimes you just have to take things one day at a time and keep on moving forward. Remember we are all on your side in this hoping you find a treatment that helps you, and this is a great place with people willing to listen on those not so great days. Smile
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#97
Tue-22-11-2016, 03:00 AM
(Tue-22-11-2016, 02:03 AM)jiml Wrote: I hope it works well for you, but don't wait for it to begin working to come back to tell us, come any time just for the company of fellow sufferers ....that's what a lot of us do
It can be a struggle coming to terms with, but you will find you will probably have periods of none or very little psoriasis showing, look forward to those times, but creams lotions and light treatment are merely holding it at bay ....but you could get clear for months or even years. I hope that is the case for you, but whatever happens come to talk it's a big help, it certainly did wonders for my self confidence when I joined here and found I wasn't alone with this awful disease ....I just keep coming back, the members are so friendly, and helpful with advice


I can't remember if I mentioned it before but a great way to see what's happening in the psoriasis world and read of other members experiences is to get a newsletter in your inbox once a month Groups



Sorry I'm shamelessly promoting it as I have just taken over as editor shhh

"but you could get clear for months or even years" - i am buying it, years, at least till i get retired Smile))
Thanks, Jim, i am here for a long-long time... This community is my best friend now Smile) light
svp3058 Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 134
Threads: 3
Joined: Nov 2016
Gender: Female
Location: canada
Treatment: not yet
#98
Tue-22-11-2016, 03:24 AM
(Tue-22-11-2016, 02:17 AM)Kat Wrote: Yes, be careful with the home treatment of light therapy.  Hopefully you have a doctor that can help you set up a treatment schedule based on what you purchased?  It is really a shame that there is not one close enough for you to go to.  I do understand why you are going that route, just be careful.

Sometimes you just have to take things one day at a time and keep on moving forward.  Remember we are all on your side in this hoping you find a treatment that helps you, and this is a great place with people willing to listen on those not so great days.  Smile

What i can say - we spent a lot of time searching and learning about home PS treatment before making this tough decision that cots us a lot of money. We will be very careful no doubt (physics is in our background, so we understand how it works more or less)...
I also mentioned in above threads - I got a panic attack in that cabin in medical facility - doors are locked, and lamps are frying you alive;
what is if anything goes wrong with the device - room is locked, cabin is locked... and no one can hear you...
At home i am getting three panels that allow me to get out without any fear to remain locked in frying booth :((( It was a real panic attack, no joke, so I prefer to have my own control.
Instructions are part of the package, I am not scared to be overcooked Smile)) - It is PS treatment oriented lamps made in Canada.
Thank you so much for your reply!
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#99
Tue-22-11-2016, 11:44 AM
Well done, svp. It will be very interesting to read of your progress.

All the best,

Bill
Kat Offline
Take my advice; I don't use it anyway.
*
Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#100
Tue-22-11-2016, 15:20 PM
(Tue-22-11-2016, 03:24 AM)svp3058 Wrote:
(Tue-22-11-2016, 02:17 AM)Kat Wrote: Yes, be careful with the home treatment of light therapy.  Hopefully you have a doctor that can help you set up a treatment schedule based on what you purchased?  It is really a shame that there is not one close enough for you to go to.  I do understand why you are going that route, just be careful.

Sometimes you just have to take things one day at a time and keep on moving forward.  Remember we are all on your side in this hoping you find a treatment that helps you, and this is a great place with people willing to listen on those not so great days.  Smile

What i can say - we spent a lot of time searching and learning about home PS treatment before making this tough decision that cots us a lot of money. We will be very careful no doubt (physics is in our background, so we understand how it works more or less)...
I also mentioned in above threads - I got a panic attack in that cabin in medical facility - doors are  locked, and lamps are frying you alive;
what is if anything goes wrong with the device - room is locked, cabin is locked... and no one can hear you...
At home i am getting three panels that allow me to get out without any fear to remain locked in frying booth :((( It was a real panic attack, no joke, so I prefer to have my own control.
Instructions are part of the package, I am not scared to be overcooked Smile)) - It is PS treatment oriented lamps made in Canada.
Thank you so much for your reply!

It sounds like you definitely know what to expect and have done your research Thumb I wouldn't have liked locked doors either! I could always open the door with the light therapy I had, pretty sure if they locked me in I wouldn't have gone back!

Good luck and keep us posted on how it goes. Smile
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