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Original poster

Is Ignorance Sometimes Bliss?

25 replies

fio2 · 15/09/2004 17:37

Was just wondering? I have had a very rare skin condition since I was about 14-16, it is mainly on my back, so i just cover up. No treatment has ever worked on it. I have always dreaded the fact it may spread to my face. Vain I know

I have never looked it up on the internet until I was looking just for a molluscum, following twiglets thread.

Doesnt sound very nice, the prognosis and now I have frightened myself

was just wondering whether it is better not to know these things?

OP posts:

bundle · 15/09/2004 17:41

fio, i suppose it depends on what can be done about it - the father of a friend of dd1's has just been diagnosed with a v rare skin/autoimmune disorder which normally affects white, older women, so it took 6 mths to diagnose him. he is now being treated with steroids though which do help to arrest some of the weakness he's been experiencing. i found pregnancy difficult because I felt I knew too much (dh certainly thought this) because of the type of job i do.

iota · 15/09/2004 17:41

dunno fio - I think ds2 has molluscum - a few white bobbles on his upper arms, but have never taken him to the doctor as they didn't seem very much to worry about really - in fact it's only recently that I've realised what they are

Original poster

fio2 · 15/09/2004 17:43

sorry bundle, very nosey of me but what has your friend got as I have a condition that affects older white women aswell

OP posts:

essbee · 15/09/2004 17:45

Message withdrawn

bundle · 15/09/2004 17:47

dermatomyositis

Original poster

fio2 · 15/09/2004 17:47

I am okay essbee, dont worry

i am just wondering whether I would have been better off not knowing thats all

now i will be upset for weeks

OP posts:

Original poster

fio2 · 15/09/2004 17:52

bundle that is so strange

I dont have that condition but my mums cousin does and it is very rare in young men

OP posts:

bundle · 15/09/2004 17:56

this guy is 30ish and asian

bundle · 15/09/2004 17:57

how does he cope? i think our friend is just relieved to have been diagnosed, and it's not something worse.

Original poster

fio2 · 15/09/2004 18:00

this guy is 33, but white

He is really bad with it unfortunatley and it took ages to diagnose. He is under a specialist now and is on really high dose of steriods. I dont know that much as it is my mums cousin and she has a massive family but his lungs are affected. He has had to go part time at work and his wife is full time. I really feel for them, it is very hard atm

OP posts:

bundle · 15/09/2004 18:07

gosh. my friend told me that only about 30 people in the UK are affected, so they're both incredibly unlucky. he has a lot of stiffness and couldn't pick up their daughter and swing her round like he used to...

is your condition similar? you sound like it doesn't normally bother you.

hmb · 15/09/2004 18:11

I don't like knowing too muc, tbh, but at the same time I get drawn to the information that I dread.

Dh was diagnosed with a slow form of leukemia and I wish to god we had not found out about it. There is no treatment untill he is symptomatic (thank god he isn't) but I still worry myself stupid. I have tried to stop looking for information, if get too wound up.

Original poster

fio2 · 15/09/2004 18:11

They are unlucky, and no i dont want to list my condition as it sounds, from the stuff on the internet that effects alot of people differently

my dermatologist told me it was only cosmetic, but from reading the stuff on the sites it isnt. It can cause alot of problems. Maybe I should get reffered again to see someone else. It looks awful though, it is lesions. I think i have wanted to read up on it for ages but have been a bit squiffy about it iykwim

He told me it was stress maybe, but it looiks like it might be thyroid related which I suppose ought to be looked into anyway. i just worry myself!

OP posts:

Original poster

fio2 · 15/09/2004 18:13

hmb sorry, i know exactly what you mean though, it just makes it worse sometimes, for me anyway, if i keep reading up on things

OP posts:

essbee · 15/09/2004 18:14

Message withdrawn

hmb · 15/09/2004 18:15

It is like being transfixed by the eyes of a tiger, isn't it? Horrified and drawn in at the same time, shudder.

Hugs to you, btw, didn't know that you had the problem.

Blu · 15/09/2004 18:16

fio, Sorry you're in such a horrid situation.
I think it would be a good idea to go back to your dermatologist, or another one, and get all your concerns discussed. Stuff on the net is not written in the context of a doctor looking at YOU, and all the other factors. And stuff on the net is almost always more frightening in real life, isn't it?
Personally, if there is something to know, I like to know it, it sounds as if you might be a more 'ignorance is bliss' type - but now that you have found out something that frightens you, i thik the best thing would be to get help and find out if you really need to be so rightened.

Good luck.

Twiglett · 15/09/2004 18:21

message withdrawn

JJ · 16/09/2004 07:06

fio2, agree with the others to go back to see your doctor with all your questions. And get that thyroid checked! Seriously, if that's out of whack, nothing else works properly.

Original poster

fio2 · 16/09/2004 07:28

I will go and make an appointment today, thanks everyone

What kind of problems does a thyroid cause?

I have no motivation, feel really down, then normal the next minute iykwim, I have put on weight very quickly, and just feel like doingf nothing. I thought it was just stress, could it be my throid?

OP posts:

JJ · 16/09/2004 07:36

fio2, those problems and more. My doctor said that whenever someone comes in complaining of depression, he checks their thyroid first to make sure it's not off.

Could be stress as well! They're not mutually exclusive, so it's not a magic bullet, but well worth checking out. (The test is a simple blood test.)

Forgetfulness was also a symptom of mine...

Original poster

fio2 · 16/09/2004 08:02

I am very very forgetful!!! my husband jokes i have mad cow disease!

No i did think i was feeling depressed but very different to how i would normally be depressed iykwim. I am def going to ask to have it checked.

My hair and nails are brittle too. Are hot flushes part of it? I hope i am not going through the menopause at 27!

OP posts:

bundle · 16/09/2004 11:33

temp control and brittle nails are signs of different things, including i think thyroid problems. doctors used to look at hands a lot to help diagnose things, not sure how much they do now. ikwym about knowing too much, but if it's something simple like thyroid, you could get treated and feel heaps better

luckymum · 16/09/2004 12:18

Fio - sorry you're struggling at the moment - you were a bit of a mad cow yesterday though

You should def. get your thyroid checked out, if only to put your mind at rest. As far as ingnorance being bliss, it just don't work for me I'm afraid. I have to be fully informed or I can't cope - dd's paed thinks I'm a bit mad as I always arrive with a whole new set of questions. I think I'm just a control freak really.

Hugs to you X

Chandra · 16/09/2004 12:40

No time to read the full thread Fio, but you are not alone, Twiglett's thread also solve a life time mistery for me. I have them at my wrists and flare during summer an when i'm stressed. Not totally sure of my diagnosis though

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